Lena Dunham underwent a total hysterectomy after years of endometriosis struggles

Lena Dunham is looking gloomy while out running errands

Lena Dunham has talked about her endometriosis for as long as she’s been famous. She’s been open about her endo-related struggles, the pain she’s dealt with, her crazy-long periods, and the multiple surgeries she’s had to try to fix or provide some kind of relief. Well, Lena has announced in the March issue of Vogue that she underwent a total hysterectomy to put an end to all of it.

Lena Dunham recently underwent a total hysterectomy to remove her uterus and cervix, in the hopes of ending her crippling endometriosis-related pain. The actress, 31, writes in the March issue of Vogue that she opted for a total hysterectomy after “years of complex surgeries measuring in the double digits” and attempts at “pelvic floor therapy, massage therapy, pain therapy, color therapy, acupuncture,” to manage her endometriosis were unsuccessful.

During her hysterectomy, doctors discovered that Dunham had other medical issues that were causing her pain.

“In addition to endometrial disease, an odd hump-like protrusion and a septum running down the middle, I have retrograde bleeding, a.k.a. my period running in reverse so that my stomach is full of blood,” she writes. “My ovary has settled in on the muscles around the sacral nerves in my back that allow us to walk. Let’s please not even talk about my uterine lining. The only beautiful detail is that the organ — which is meant to be shaped like a light bulb — was shaped like a heart.”

Dunham had thought that she was finally “disease-free” in April 2017, after her fifth surgery in a year to move her ovaries away from her rectal wall. She announced the happy news in her Lenny newsletter, but was hospitalized just a month later during the Met Gala, and had to cancel her planned Lenny IRL tour. “I’m in the greatest amount of physical pain that I have ever experienced,” she said in May.

Though she now cannot carry a child, Dunham, who recently split from boyfriend Jack Antonoff after five years together, says she now wants to explore her options for having children, from using any remaining eggs for a surrogate to adoption.

“I may have felt choiceless before, but I know I have choices now,” she says. “Soon I’ll start exploring whether my ovaries, which remain someplace inside me in that vast cavern of organs and scar tissue, have eggs. Adoption is a thrilling truth I’ll pursue with all my might.”

[From People]

In some way, I’m happy for her that she made a proactive choice for her health and her ability to manage pain. She genuinely struggled throughout her teenage years and through her adult life to find a way to manage endometriosis, and now she gets to experience a full life past that. It will be a whole new world for her. This was major surgery too – I wonder when she had it done? She was out in LA during Golden Globes week, quietly attending a few events. I wonder if she had it done around the same time she and Jack finally split for good? Also: of course she could still find a way to become a mother, through adoption or surrogacy or a gestational carrier. But I don’t know – should that be her highest priority right now? Just take a few years to find some kind of new balance in your life.

The Met Gala 2017

Photos courtesy of WENN, Backgrid.

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149 Responses to “Lena Dunham underwent a total hysterectomy after years of endometriosis struggles”

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  1. Hh says:

    That ultimately sounded like the best decision, but I know it had to be arduous to make. Good on her for being candid about it. Also, while I think she should definitely take some time to unwind after this surgery and enjoy life, I do commend her on researching. I know people want to say, “if it’s meant to be and it will happen” or “don’t stress it,” but you also don’t want to be so lax that you’re caught off guard.

    • Flk says:

      I’ll be honest, I’m grossed out by all the details personally but I can’t criticize her for talking about these issues. Hopefully some women out there who are struggling with unexplained health problems will look into it and maybe get a proper diagnosis…

      I recently read a brilliant article on how female pain and discomfort is ignored and seen as a normal part of life that women are expected to live with. It said that on average, it takes a woman over 9 years to be diagnosed with endometriosis from the moment she develops symptoms.

      The article is called The female price of male pleasure and it’s AMAZING http://theweek.com/articles/749978/female-price-male-pleasure

      • manda says:

        omg, you were right. great article. spot on. thanks for sharing

      • Va Va Kaboom says:

        Wow, just wow. Maybe I’m woefully behind the times but I’ve never even considered the differences in the female/male sexual experiences from the angle the author made. Everyone should read this and thank you for the link.

      • Wrenaus says:

        Thank you for the link to this article – mind blowing!

  2. Nicole Savannah, GA says:

    Had a hysterectomy last April. Don’t feel much different. Still getting endo on bowels, cysts, etc.
    It is no way a cure.

    • LooseSeal says:

      Oh wow, Nicole, I’m so sorry that’s happening to you. It must be so frustrating. I have endo too. I’m glad it’s getting more and more attention. There’s just not enough research out there. Most doctors I’ve seen (at least 20) act like a hysterectomy is a cure-all. I’ve also found that most doctors are pretty dismissive of the disease in general.

      • Nicole Savannah, GA says:

        Hey! It’s so nice to talk to you today. It is SO unbelievably understudied. Think about it. Big pharma can’t get money unless we can reproduce it feels. Long story and I’m on the way to work. I’ll try to better explain if I’m making no sense.

      • Mel M says:

        Yes! I have endo, lots of scar tissue in there, had surgery and they laid down seed for prevention. Didn’t work. One doctor told me that endo is basically just a myth and every woman has some form of it. I did not go back to him.

      • Kelly says:

        And that’s why I only use a female gynecologist. I want to see someone who has the same parts as me.*

        *Lost my ovary due to a grape fruit sized endometrioma, and self-injected Lupron for six months.

      • Trashaddict says:

        It’s a lousy, awful disease. My sympathies to anyone who has to deal with it.

      • Numi says:

        Except its not getting more attention – not the right kind – in the last 40 years the treatment choices ( and level of research) for Endo is EXACTLY the same. Hardly any money is put into trying to understand it – Doctors still know no more than they did back then really. It affects around 10% of women, some are symptom free but not the majority.

        Its just THE classic example of the medical world really not giving a shit about womens issues.

    • C-Shell says:

      Yeah, I had a hysterectomy when I was in my late 30s because of intractable endometriosis and fibroids. The surgeon left my ovaries, but the endo kept recurring so they had to come out too. That ended it, finally. The pain really can’t be described— maybe like there’s an alien living in your pelvis eating your guts??

      • NicoleinSavannah,GA says:

        It does! I do still have my ovaries, will be 35 this year and am trying to make it a little longer before asking for time off from work. It is so debilitating. I have no life. You are giving me courage and hope, though.

      • delphi says:

        I always refer to it as posession by the Dementors. Because that is exactly what it feels like. In March, at 37, I am FINALLY getting an elective hysterectomy myself, as well as getting my rapidly declining gallbladder removed. So hopefully now I can function with less pain and inconvenience. I’ve been battling with both organs for 20 years, so this is so welcome. Thank Bob for laser surgery.

      • NicoleinSavannah,GA says:

        Yes, gall bladder and appendix are gone too. Good for you. I hope it helps at long last. 20 years is how long it took my diagnosis as well. I wore gowns for months! I finally can wear jeans. The one helpful thing that happened is I lost about 40 pounds. I hope you get the relief you DESERVE. Hugs and love.

      • RedOnTheHead says:

        I started having laparoscopic surgery for endometriosis in my early 20s. After 3 surgeries it finally stopped recurring. A medical oddity according to my doctor but whatever, I was just glad it stopped. C-Shell nailed it, the pain is just indescribable. And horrific. I resisted a hysterectomy at that age because I didn’t want to go into menopause in my 20s. I eventually had my uterus and ovaries removed because of recurring fibroids. That is also painful. I opted to have my ovaries removed at the same time so I would never have to worry about ovarian cancer. By this time I was in my 50s and in peri menopause so what the hell.

        I can’t shade Lena here (even though I can’t stand her) for opting for the hysterectomy. At some point you get so desperate for the pain to go away you will do just about anything. And as other commenters have said, it’s not a guaranteed cure but it works for some people. I just hope she fully prepared herself for menopause at such a young age. For all of you younger ladies here, PLEASE research what you’re getting into if you go this route. Menopause is no joke either, although it’s not painful.

        Sorry for the long, rambling post. These kinds of problems with the female reproductive system is a subject close to my heart and I get wound up about it. Primarily because you can be DAMN sure that if men had to experience crap like this, there would be a cure by now.

      • C-Shell says:

        You know, the instant menopause wasn’t too bad once they got my HRT adjusted properly, and I stayed on Estradiol for about 10 years. THEN, a doctor (young female, so that just pissed me off) took me off it and the hot flashes were debilitating. I had a very demanding career and couldn’t tolerate sitting in meetings with sweat literally running off of everything 30-50 times a day. Soaked the bedsheets at night. I hate that woman. Anyway, acupuncture and Chinese herbal medicine helped immensely. Just another thing to consider, if it ever becomes a problem.

      • Jaded says:

        I too had an early total hysterectomy because of endo, fibroids and cysts on my ovaries. Went on HRT for a long time and had to go off last year because of breast cancer so I ask all women out there who have gone through a similar situation to please PLEASE don’t stay on HRT any longer than 5 years. Believe me, you don’t want to get cancer. I’ve managed instant menopause with a combination of black cohosh and something called Gabapentin which is, in much larger doses, a drug that prevents epileptic seizures but in smaller doses helps control hot flashes, night sweats and insomnia. My sympathies to all of you who have gone through this crap, it’s nightmarish.

      • paranormalgirl says:

        I was on a low dose of Gabapentin (Neurontin). It really did help.

      • Olive says:

        @Jaded i take gabapentin for anxiety and am always surprised to hear the many uses for the drug! another friend takes it for joint pain!

      • Uglyartwork says:

        Here’s another one: my dog is on gabapentin to manage symptoms of cerebellum abiotrophy(tremors, ataxia). Works very well.

    • H says:

      So sorry Nicole. I had my hysterectomy in June after having two other surgeries for endo, fibroids and cysts over the years, it doesn’t cure it, I hope Lena understands that. I hope your recovery was smooth (besides the endo returning), as I tell friends, this is not an easy surgerical recovery.

      • NicoleinSavannah,GA says:

        It is not at all. With awesome ladies like ya’ll, it makes it easier to deal. The most unexpected support group I have found is this site.

    • Chaine says:

      One of my older relatives had this. Back in the 70s and 80s, it was not well known at all. She was not properly diagnosed for years, was told the pain was all in her mind, etc. and meanwhile pain and bleeding was so bad she would be literally bedridden. It was not until she had surgery and a lengthy hospitalization for a completely separate issue that nurses while she was in recovery from that surgery clued her in to what it could be. Not sure why hysterectomy was not suggested, but eventually she was medicated with something that suppressed the ovaries and induced early menopause, and that ceased it.

      • HH says:

        Ugh, so sorry to hear that.

        ” She was not properly diagnosed for years, was told the pain was all in her mind.” >>> Just reminds me of Freud and the “hysteric” woman. Women have to go through so much. Makes me all sorts of sad and enraged.

      • Nicole Savannah, GA says:

        The medical menopause is a real bitch on the bones. In the 80s women were given the same doses of Lupron as men. Lupron is used for male prostate cancer as well. It’s not the greatest. In fact, many people loathe it, did a lot of research, and have been on the 3 month shot for 4 years.

    • Asiyah says:

      Nichole, I’m so sorry you’re still feeling pain 🙁

      • NicoleinSavannah,GA says:

        Thank you. I have you ladies and a great support group. I also know there are women with worse issues than me. I just take every opportunity to educate people I meet about it. It really is like the movie’s title. Endo what?

    • JustBitchy says:

      I suffered from it for years. Staying on the pill and getting/allowing only 3 periods per year helped. I finally took out my overview at age 42-best decision ever. No more estrogen and endo thrives on estrogen also nearly eliminate risk of ovarian cancer. I suspect (I am speculating based on family history with aunts counsins sisters alll NO BRCA gene, but endometriosis getting ovarian cancer. My thought is any abnormal proliferation of cells where they should’nt be is not good.

  3. Nicole says:

    I think she’s considering it now because I assume her doctor would want to harvest any eggs sooner rather than later.
    I will say this is a brave choice. I will criticize her for a multitude of things but being upfront about this for years was always good.

  4. Maria F. says:

    i do feel sorry about her and hope that this will not resolve her medical issues.

    Since i started menopause, I have regular UTI’s, so I can only imagine how painful and hard to live with her problems were.

    As for kids, i think it might be a consolation for her to focus on possibilities of realizing her wish for children. She can be proactive later, when the time is right.

  5. TheOtherMaria says:

    Here I was hoping the silver lining was she wouldn’t pass her inherent narcissism and self victimization onto another human being…

    Hopefully, she can grow before parenthood otherwise that potential child has no hope.

  6. INeedANap says:

    I am not a fan of hers but I feel for her struggles. So many women live in pain for years with no real diagnosis and apathy from their doctors. It seems like this surgery was a last-resort option, but I hope it gives her a new lease on life. I had an ovary removed last year and it totally changed my quality of life.

    Dumb question: if she still has her ovaries is it a full hysterectomy?

    • OriginalLala says:

      no, it’s a partial. My aunt had a partial hysterectomy to deal with endo. When she was older she got ovarian cancer and passed away from it. She always told me she really regretted keeping her ovaries 🙁

      • INeedANap says:

        I am so sorry for your loss. It’s hard to know what the right choice is in the moment because no one wants to go through surgery.

        I gave up an ovary and the attached fallopian tube. My whole family was screaming with rage at me because it would slightly impact my fertility, but I did it anyway and I am so happy I did. I know the other one may have to come out in a few years and I am ready for that.

      • Sabrine says:

        If feasible, it’s probably a good idea to try and keep at least one ovary if you are younger and have a hysterectomy. I was at the age of menopause when I had mine and even though I wanted to keep them, they recommended having them removed. I went along with that. Now I use Vagifem tablets twice a week and they are working really well.

      • Asiyah says:

        I’m so sorry to hear that, LaLa

      • JustBitchy says:

        OriginalLala -see my comment. I totally think there is a line between endo and ovarian cancer. She’s gonna want those little nuts out.

    • Carmen says:

      Actually, INeed is right. I had a TAH when I was 38 after years of heavy periods due to fibroids where the bleeding was so severe I almost went into shock. As the doctor explained it to me, a TAH is removal of the entire uterus. Removing the ovaries is a separate operation which is often done with a TAH and is called an oophorectomy. I had a TAH without the oophorectomy and had a normal menopause 15 years later.

      • Heat says:

        I’m facing a Total Hysterectomy this coming summer. I had an ablation last summer, in the hopes that it would slow/stop the heavy, long periods, but nope. Nothing changed…only got worse with more severe cramping added to the mix. My doc said she wants to leave my ovaries so that I don’t go into medical menopause, which she said is menopause-zilla. While the surgery and recovery are scary, I’m looking forward to ‘living’ again. Since half of each month of my life is currently spent ‘dealing’ with my period issues, this is looking light a light at the end of the tunnel.

    • Pomegranate says:

      Partial hysterectomy = uterus only
      Total hysterectomy = uterus and cervix
      Radical hysterectomy = uterus, cervix, ovaries and Fallopian tubes

      • Trashaddict says:

        I advise getting the operative report after your surgery so you’ll always know/remember what was done. Because my OB/gyn friend told me that’s the only way to be really sure (that, and the pathology report).

    • Domino says:

      I could be wrong, but i don’t think we need our ovaries for just childbearing, they also play a role in keeping our bones healthy. For example, in women with anorexia doctors always focus on getting the period back naturally because even if you supplement estrogen and progesterone and/or once they have gained enough weight get them to lift weights, for some reason doctors found that nothing protects the bones as well as the progesterone and estrogen our ovaries naturally produce.

      So I think that is why doctors are loathe to take out ovaries, in addition to the uterus. You potentially solve one problem – endometriosis, potentially create another – osteoporosis.

      • JustBitchy says:

        Baseline bone density, then daily recommended calcium and vitamin d, plus strength training better than the alternati

  7. littlemissnaughty says:

    I thought a total hysterectomy included ovaries. I learned something today!

    This all sounds awful and this decision cannot have been easy. Good for her. There is so much sh*t that can affect your reproductive organs. My PMS and period cramps alone sometimes seriously affect my daily life. And that’s not a medical condition. I recently discovered that especially young women (25 and under) often have no problem talking about any of it. I love it.

    • PunkyMomma says:

      As stated above, a TAH includes the ovaries. It throws women who are not menopausal into instant menopause, which can be a nightmare, even with hormonal replacement therapy.

    • CairinaCat says:

      A total does include the tubes and ovaries.
      During the birth of my second my uterus ruptured and because of the damage and tearing they had to remove my uterus and cervix. I had a partial hysterectomy.
      I don’t get my period, yay!! But I do still ovulate which kept me from instant menopause.

    • H says:

      After much debate within my family (a lot who are medical professionals), I elected to keep my ovaries when I had my hysterectomy. Since I just turned 50, I’m in that gray area where I wasn’t menopausal, and current research shows that you are at a higher risk of heart attack if you take the ovaries prior to menopause.

      My one uncle, who is an oncologist before he retired, advised me to remove the ovaries because he had seen too many women die from ovarian cancer, but since there is no family history of that type of cancer, I elected to keep mine because there is a history of heart disease. I’d rather not die of a heart attack like my brother did at 52.

      Old-school gynecologists used to take everything when they did a hysterectomy, but current doctors tend to be a little more conservative and want to leave your ovaries if you are under 60 because your ovaries are still producing estrogen. But in the end, it is a personal choice for each woman, and I advise anybody looking into this surgery to research it for themselves.

      • Blannie says:

        I had a partial hysterectomy at 51 due to fibroids. I elected to keep my ovaries and my cervix. I had to go through three doctors to find one who could do it laparoscopically while leaving my cervix. The young female OB/GYNs I first saw didn’t know how to do that kind of surgery, which shocked me. I eventually found an older guy who was a Reproductive Endocrinologist Surgeon. The younger female docs wanted me to go on Lupron to shrink my fibroid, which I didn’t want to do. Lupron has scary side effects including memory loss. The surgeon I used didn’t require the Lupron either. I was back to work two weeks later (which was a mistake – I should have taken off another week). Sixteen years later, I’m glad I kept my ovaries and my cervix. But was weird to “feel” like I should have been having my period but with no physical evidence.

  8. Naomi says:

    Both my sister and mother are medical doctors but in different fields to gynaecological health, and they both attest to how compared to other medical areas backwards gynae health is. My mum told me when she was first training being aghast at how little progress was being made in gynae health and that was 30 years ago, she says not a massive amount has changed.

    • magnoliarose says:

      I believe this, and it is alarming what this means for women needlessly suffering when 30 years of research and progress has been wasted.

    • Asiyah says:

      I was just telling my husband that for all of our medical advances one of the fields if not the main field that is still “backward” is gyn/women’s reproductive health. He agrees (studied medicine). I’ve heard so much advice on how to “cure” or deal with my fibroids and I have to argue nonstop that while some things ease the pain and can help we have no idea what causes fibroids or polyps so I can’t even do things to stop them from growing again. If it wasn’t so expensive I would go into medical research to study us.

      • Nicole Savannah, GA says:

        Read an article last year that said gynecology is so behind because, I shit you not, all of our vaginas are so different.

  9. barrett says:

    I have this disease. The pill suppressed it in its early stages but it’s insidious. I am just warding off a hysterectomy. She needs to think ab the egg retrieval now bc a hysterectomy sometimes causes the body to go into menopause. Don’t judge her for thinking of that you! I think a lot of people don’t know what it’s like to be put in this arena , you can’t delay thinking of it. Tick tick. I found out late and only had miscarriages. You move on make lemonades out of lemons but you always feel on the periphery. And you wonder what if I’d known sooner and could have harvested my eggs? Tick tick. Hugs to all suffering.

    • LooseSeal says:

      Hugs back to you, Barrett! There are so many of us out there. We should have an endo party out here on the periphery! I’ll bring the heating pads and towels soaked in clary sage oils.

      • elimaeby says:

        I’ll bring the snacks and the wine! I’ve been struggling to get pregnant/maintain a pregnancy. Made it to almost the second trimester back in November, which was devastating. My partner and I are starting to look into harvesting my eggs and how we might afford it. It’s not an easy road, but like barrett said, you do your best to make lemonade. Hugs to all sufferers.

      • NicoleinSavannah,GA says:

        HUGS ALL AROUND. Yes to the oils and heating pads! I have been through so many. Do ya’ll get that nasty skin reaction from heat too long and endo belly? I grow an endo baby/belly almost daily.

      • elimaeby says:

        NicoleinSavannah,GA, I usually wake up okay, but end up with my pants too tight by the end of the work day. I actually keep one of those pregnancy extenders on my jeans so I can loosen them as the day goes on. And yes, to the heating pad rash! I feel your pain!

    • Asiyah says:

      Barrett we love you. *hugs*

  10. Belle says:

    Perhaps this is for the better. Considering how she treats her animals, can’t imagine she’d be a good mom.

    • barrett says:

      Endo oe endometriosis belly is painful bloating, distention, burning, issues w bowels from the disease tissue/adhesions, and hormone changes. Mine is brutal around ovulation. I had to complain for years before a physical therapist gave me literature on it. My physicians were zero help across specialties. Why on earth don’t doctors know more about this? I got diagnosed at 35!

      Need the #endo too movement

  11. Deanne says:

    I’m not a fan of Lena Dunham, but I wouldn’t wish endometriosis on my worst enemy and I think she was brave to make this choice and talk about it. She’s very young and to have made this decision couldn’t have been easy. My best friend has endo and it’s been life altering for her. It’s affected her fertility, relationships, career etc. She’s been in total agony and accused of exaggerating. You rarely hear endometriosis talked about, yet so many women suffer from it. In this case, Lena’s tendency to overshare could help others who have this disease.

    • Pix says:

      Agree – i think the more light you shine on a topic like this the better for younger women. I am not a fan either, but I really do feel for her.

  12. Jaded1 says:

    I have severe endometriosis. My doc said after my first surgery that it was the worst case he’d ever seen. I am lucky, though, that I don’t have much pain *knock on wood*. But I have had 4 surgeries, my appendix removed and infertility because of it. The problem with keeping your ovaries is that the hormones can cause any remaining endo spots to flare up and still grow. But, of course, you get rid of your ovaries and you go into complete menopause and have all the problems associated with that. I have been able to mostly manage on BCPs, though my period is always crazy heavy. But I’m nearing menopause age, so I’m hoping to avoid a hysterectomy.

    And with endo, and especially with even a partial hysterectomy, it’s completely natural to think about your baby options. I mean, what else is a uterus good for? And she’s only 31. I struggled for a couple years with fertility treatments before moving on to adoption. In some ways, it would have been easier to just be told “nope, you’re not carrying a baby, so figure out your next move” and have just moved on to adoption sooner. But it all worked out.

  13. HK9 says:

    Had a hysterectomy in 2015 after 10 years of debilitating periods (left my ovaries in) and it was the best.decision.ever.

    • adastraperaspera says:

      I went from the bad periods to endometrial hyperplasia. Since there is not much information out there, I didn’t even know what that was. I’m glad the surgery prevented it from becoming cancerous. Life has been better since the surgery, for sure.

  14. MsRaysor says:

    I actually just had a hystetectomy in December for fibroids. One the size of a grapefruit. My records say TAH, Total Abdominal Hysterectomy. I still have my ovaries. But everything else is gone including tubes. A full hysterectomy is uterus and cervix. There are other names for the procedures of tube and ovary removal. I feel so much better after. I had uncontrollable bleeding and life threatening anemia before it. I’m not a fan but glad she hopefully found some relief.

  15. mkyarwood says:

    I wonder what this will mean for her lunacy. Hormones can be a hell of a drug, and their imbalance fueled my mania for decades. My MIL had one later in life. Hers was never ‘used’, and had become pre cancerous, with many polyps. In her case, some of her joy was definitely lost. Anyway, a good decision. Women taking control of their health is always good news.

  16. Kitten says:

    Oh man, I just wanted to extend my sympathies to all the women here who are suffering from endo. I cannot imagine the amount of pain and frustration you all must be going through. Sigh. Women always get the sh*t end of the stick huh? Stay strong, my celebitches. ♥ ♥

    • NicoleinSavannah,GA says:

      Thank you. I wish so many other women in the real world around me were as understanding as my celebitches.

    • magnoliarose says:

      The lack of research in this area is appalling. Something is causing this in numbers this high and yet there are no real answers or solutions. 🙁
      Women’s health should be a priority. It is a feminist issue but a difficult one to tackle when women can’t even access the basic health care.
      Stay strong ladies. Be kind to yourselves, and I wish soon for a cure, so no woman ever has to endure this again. Hugs and a large warm cup of roasted dandelion tea.

      • NicoleinSavannah,GA says:

        The dandelion messes with my hormones! How dare you! I kid. HUGS for us all.

      • magnoliarose says:

        🙂 Hugs to you.
        I remember your surgery and how miserable you were. We chatted a bit about your friend who was waiting for a bed in a hospital.
        I am sad to hear you are still not feeling great. 🙁 💐

        No dandelion tea…hmmm How about hibiscus with a little lemon syrup. Maybe some aromatherapy for relaxation and perhaps a ridiculously terrible movie for laughs.

      • Nicole Savannah, GA says:

        I’ll definitely take that! I did watch an hour of the 2nd 50 shades and cracked up! Friend is now way worse. Please send all the vibes, love, light. Anything. Georgia’s mental health system is apparently non existent.

    • MsRaysor says:

      I’ve been a lot more vocal and open about my health issues gearing up to when I had my hysterectomy. I tell my women friends to speak up at the doctor. Pain and heavy periods are not normal. And if you’re able, please use a woman gynecologist. Pain or bleeding that interferes with normal activities needs to be taken seriously. And if you have to have a hysterectomy, there is a plus. You can buy new undies and never have to worry about stains again.

      • Mitastak says:

        In my experience women OBs are more rough and less understanding. My OB is a male and is amazing. He listens to my concerns and no one screws with his patients.

  17. xena says:

    Last week I had to let go of taking the pill against endometriosis and I am mentally not feeling well with it – there are no other options left for me, but the enormous stomach pain it causes me means to be in nonstop pain. In addition I am starting to get blue legs. And I am allready having huge warming bottle scars on my belly.
    With menstruation there’s at least a chance to have a week or 10 days of pain break in the short run. I am feeling very fucked up and betrayed for having to deal with this because the cramps are causing me secondary pain issues but honestly I don’t know what else I should do. It feels so senseless consulting doctors because I am not really being helped. I know that they can’t do miracles but I was very much very left alone with dealing with the extreme pain for months after the operation, and also with the stomach issues. It is absolutely bizarre, but getting diagnosed after 20 years didn’t really do much for me. Especially in the pain department.
    Honestly I do not like Lena, but she must have gone through pain hell over the last years. Thank you for giving me a chance to write this off my chest today.

    • NicoleinSavannah,GA says:

      Hugs, babe. I get it. It is very hard some days and the other illnesses that come with it that are exacerbated are seemingly endless. I broke down yesterday. I am mentally exhausted with this and well, life too. Some days feel hopeless and like I am not even really living a life.

      • xena says:

        Hugging you back a bit tearyeyed. You are right, this is exactly how it feels sometimes. It sucks up so much lifeenergy.

      • NicoleinSavannah,GA says:

        Hugging tighter. This whole thread is making me cry at my desk. Feels like therapy.

      • magnoliarose says:

        You aren’t alone, and you certainly aren’t forgotten.
        I don’t have any words to make it better only anger for you and all the other lovely beautiful souls suffering for no reason.
        Do you have a pain specialist? Do they give you any exercises to help ease your mind and anxiety when you are in pain?

  18. Tw says:

    What a nightmare. Very sad and difficult. I can’t imagine how tough it is for women who don’t have the resources to treat the disease or harvest their eggs.

  19. Junebug says:

    So many stories of brave women in pain here. Love and hugs to you all x

  20. L says:

    To clear things up, as the daughter of Gyno and someone who suffered with endo: total hysterectomy is uterus and cervix and tubes. Radical hysterectomy all of the above + ovaries.

  21. Other Renee says:

    I had a rare condition where a fibroid grew outside my uterus on its own pedicle. Before my period it twisted (torsion) which resulted in excruciating on the floor pain for ten minutes or so every few hours. Went on for years. Had one idiot male doctor tell me it would be cured with diet and exercise. In other words he didn’t believe it was anything out of the ordinary. Another said come back while it’s happening. Ridiculous as it wasn’t constant. Finally, before gallbladder surgery I told the surgeon to turn the scope downward and look. He took pics. My new gyno knew instantly by looking at them what it was and three months later I had a partial hysterectomy which was uterus and cervix. No more pain. Makes me angry that no one really believed me enough to try to actually try to find the source of the problem. I had to do it myself.

    • NicoleinSavannah,GA says:

      THIS. Hugs and love to you. So, are all of us with endo walking around without out gall bladders and appendix, etc?

    • Asiyah says:

      “Had one idiot male doctor tell me it would be cured with diet and exercise. ”

      Have one friend who keeps insisting that diet has a lot to do with fibriods. Look, I’m all for improving one’s health, and I know from personal experience of some food that exacerbate the situation for me, but to conclude that changing one’s diet will cure this is bogus especially when we don’t know what cause fibroids or polyps. Like come on! This isn’t gastrointestinal or digestive.

    • magnoliarose says:

      So basically one thing had to break down to get any relief for something debilitating and chronic.

    • Trashaddict says:

      Other Renee, glad you had such a great idea to make use of the look see with the other surgery! That was brilliant. Great self-advocating. It sucks that no one could figure it out.
      It might be that it’s pretty rare? But still, pain is a message – they should have kept digging.

  22. Lizzie says:

    i’m not going to hate on this. my mom had bad endo (i am an only child. she tried to conceive for 14 years and only got pregnant once with me) and she had a complete hysterectomy when she was in her early 40’s and it completely changed her life. she basically had a period for 30 years. the 1 month menopause without hormone replacement therapy was straight up scary but after her body adjusted – she threw out the pads with glee.

  23. Jess says:

    I went undiagnosed with endo for years because doctor after doctor refused to believe I was having legitimate pain. They told me I just couldn’t handle menstrual cramps or I was drug seeking. Luckily I found an amazing doctor two hours away who believed me and did the surgery to confirm endometriosis, so much damage was done by that time and I wasn’t supposed to be able to conceive naturally, but one year later I had an oops baby, lol. I had to find a new doctor when he retired and even with a confirmed diagnosis I still had issues with doctors believing me!! I’ve had two other surgeries that found endo all over my pelvis, uterine wall, ovaries, colon, even on tendons in my hips so I had pain when walking as well. My plan is to have one more baby then have a complete hysterectomy, it’s awful and I feel for Lena on this one.

    I saw a commercial about endometriosis recently so hopefully it will be more recognized and women will stop having to suffer through it. Men would NEVER have to go through this and it makes me sad how differently we’re treated.

    I like Lena and it sounds like she’s been through a lot lately. Hopefully her life will be pain free from now on.

    • Asiyah says:

      “I went undiagnosed with endo for years because doctor after doctor refused to believe I was having legitimate pain.”

      THIS! I would go to doctors and describe my menstrual pain and the male doctors would obviously not relate but even the female doctors acted like I’m exaggerating or like this is nothing. Only one FINALLY mentioned that I might have fibroids and recommended I go for an ultrasound and lo and behold I did. They had calcified/died inside me so I had to have a hysteroscopy. God knows how long I had them for. I went to doctors for almost a decade and not one suggested I go for an ultrasound to check if I have fibroids or polyps and I certainly never heard about endo.

      • Jess says:

        I’m sorry you experienced it as well, it’s not fair, and it’s infuriating isn’t it?! Like oh that’s just a woman being all irrational and dramatic, she can’t possibly know what’s going on with her body.

        I have a 25 year old friend who has 3 children and she cannot find a doctor who will tie her tubes, they all say she’s too young and will change her mind. My stomach rages for her, and she probably will end up pregnant again because she hates pills and condoms, and she can’t be publicly upset with having another child because she’ll be shamed, so wtf option does she have?!? it’s shocking that we’re still treated this way.

      • magnoliarose says:

        This makes me mad too. We are not children.

        Your friends might look into University Medical Hospitals. They often have clinics or a research department or someone on staff who may be able to help her find doctors who are open minded. She can also try Planned Parenthood. The charity I help with have had to go to University hospitals to get help for health issues, specifically gynecological because they can’t access high-quality physicians. The sad fact is sometimes things are found that should have been found earlier, but in other cases, we have been able to get tubal ligations for younger women. Often during childbirth but a few times because their lives couldn’t handle more children. FWR.
        She may have to research and make a lot of inquiries, but sometimes there is an answer.

      • Jess says:

        Thank you Magnoliarose! I’ll let her know:)

  24. ellieohara says:

    I’m still not watching her new show.

    Still, here’s hoping her recovery isn’t ruined by a black man assaulting her by failing to pay her sufficient attention or a black woman being raped by one of her friends.

    • tw says:

      Ooh. I respect your commitment to the truth.

    • xena says:

      Most people here said someting along the lines of no being able to stand her – for example, I don’t watch any of her shows – commenting here felt more like a usertwist, we are no really talking about her or her show, but about us and what endo does to us.

  25. Valiantly Varnished says:

    I dislike this woman with the heat of a thousand suns, but as a woman I can empathize with the ordeal of having to make such a huge decision like this at such a relatively young age. I have uterine fibroids which thankfully have not grown bigger (I have one the size of a grapefruit in my uterus) and hasn’t required surgical intervention. I am so grateful for that.

  26. NG_20 says:

    I had a hysterectomy in 2012 at the age of 36 and it was the best decision ever! I also had a bicuspid uterus, and I had a LOT of pain and bleeding. I was also extremely lucky to have been able to have children with this condition. I didn’t have endo though and I could just imagine it must be having lived with the pain from my uterus for so long.

  27. Anastasia says:

    Reading all these comments, it really angers me to no end what lengths women STILL have to go through to convince their doctors of their pain.

    I would always ALWAYS recommend having a female gyno (though that doesn’t always mean no problems whatsoever, but at least a female gyno knows what it is like to BE a woman).

    I would ALWAYS fire any gyno who seemed to blow off my concerns or not pay much attention to them. If you report horrible pain, there should be SOME action taken to find out the source of the pain and eventually figure out how to stop it.

    One gyno I had, male, WAS very proactive, and discovered I had adenomyosis (where the lining of your uterus grows INTO the muscle of the uterus–fun!) and he did treat it successfully and without delay, but at my third follow up appointment, when I confirmed that I had no pain, no problems, and was about 1000% better, he slapped my inner thigh (he was in the middle of an exam) and said, “Good! Now no more griping about your period!”


    1. I never griped about my period. I griped about PAIN.
    3. I got up off that table, and informed him that for that comment, I wouldn’t be returning. He apologized, but seriously. Who says stuff like that? Men to women. From that moment on, I only had a woman gyno.

    • lucy2 says:

      I’m glad you fired him as your doctor, and told him to his face. I hope he never was that insensitive to another patient again.

    • NG_20 says:

      It took me getting pregnant and having a caesarian before I was believed when the doctor actually saw my uterus then he was like oh ya this is the problem and ya I believe you now ..

    • HoustonGrl says:

      Very true

  28. Jag says:

    I don’t like her at all, but I’m hopeful that she’s finally pain free.

    One does wonder what kind of medical care she was receiving to not know that she had a septum and retrograde bleeding. I know that for myself, many of the doctors that I have seen have been horrible.

    Perhaps she will feel like championing women’s rights to receive proper and good medical care after this. Studies have shown that most doctors – including female doctors and especially ER doctors – dismiss women’s pain and typically don’t treat their pain well enough, compared to what they do for men.

  29. Asiyah says:

    I don’t have endometriosis but I have fibroids so I understand to a lesser extent the pain and struggle she went through. I had two hysteroscopies and I might need a third (long story I don’t want to get into). For now, the remaining fibroids aren’t causing me pain or discomfort for the first time in a very long time, so I’m just buying time before I do my third one (still paying off the first two procedures unfortunately). I can’t stand Lena at all but I feel so bad that she had to go through all of this pain. The pain of my fibroids affected all areas of my life and I can only imagine how this affected her as endo is much worse than fibroids or polyps. I’ve even lost friends over this because nobody bothered to understand or even ask why I wasn’t hanging out with them (the spotting or excruciating periods kept me from having a social life at times) and they just assumed I was “ignoring” them because I got married. While I think she’s too young for a hysterectomy I am not a doctor and after all of these procedures that didn’t work for her I say maybe this is for the best. I hope this improves her well-being because to live in pain and agony is no picnic. I wouldn’t wish what she has on anyone.

  30. Shambles says:

    No endo for me, but I have ovarian cysts and devastatingly painful periods. I’m about to start one. Hugs to this group of badass, strong, intelligent women~ I love you all. You are all my valentines!!!

  31. lucy2 says:

    I’m lucky and don’t have endo, but several friends do and all had to have early hysterectomies. It sucks for everyone that is affected by it, and I’ll include Lena in that, though I can’t stand her.

  32. HeyThere! says:

    I just want to hug everyone one here! Women’s health has been put on the back burner for way to long. There are zero excuses. My story starts after being pregnant and giving birth. I had bad gallbladder issues my entire pregnancy. After giving birth it was the same. Anything I ate sent me to the toilet, doubled over in pain, voimit puke yeah it was bad. It has never gone away. I have had a second baby, same issues. It’s a miracle I even got pregnant because sometimes sex is so painful I feel like I’m dying. I tried to talk to a nurse and my female family doctor about it and was basically told to suck it up. I don’t think they realize what I was going through and they weren’t willing to listen. My youngest is about 7 months and I still can hardly have sex with my amazing husband, my gallbladder(I think) acts up constantly. I live in the bathroom and I’m scared to eat. I tried to talk to my doctor about my gallbladder and they did an ultrasound and said “looks good”, but I found out from a friend that is a doctor that untrasounds don’t show how well a gallbladder functions. I was like WTF. After my untrasounds showed my gallbladder ‘looked good’ they refused to give me the time of day. I am so fed up. I need help. I have no idea what is going on and I feel like nobody will help. I know it becomes a problem when it interferes with your daily life…..and this has been a struggle for years. All this inspired me. I’m going to make an appt with my OBGYN this time and demand answers.

  33. FredsMother says:

    OMG! Thank you Kaiser/Dunham. This write-up today feels like it was put here for me. I have a million and one questions, fears, doubts; and I want to punch the c#ntish female gynae I saw last week. For 4 years I have been having back pains and peeing like 4 times per night, absurd pains around the time I ovulate. I learnt that I had myomas when I was pregnant. But they were really small…but I had a bunch of them, though small. Now they have grown…6 of them, each around 2cm. The back pains are worse. The nightly toilet trips have me sleepless for years now. My grandmother died of ovarian cancer at 53 and my mother died at 38 from a cyst growing out of her back. I am now 38. Totally scared.

    So I go to my doctor last week and she says it’s fine. We monitor. See how fast the myoma grows. Nothing more. Or you can have an IUD hormonal therapy. F#ck that! My mother had an IUD and she still died young. I am like, I am done babymaking; and I want to remove my uterus. Doctor misogynist says no; no doctor will do this because you are too young. Shit. I am not trying to die and leave my child just because the manscientist have determined for women that they must choose youth over longetivity. I do not care about hitting menopause. I just want to be alive for my child. My mother died when my youngest sibling was 16 months old! Facking scary. Should I have glowing skin while I rot in my coffin, leaving my child behind?

    The science/research is going nowhere; so I have to elect to do what I must in the name of self-preservation. Going to another country next week to discuss taking all the shit out–uterus, fallopian, ovary, whatever!

  34. Dani says:

    Many hugs to you CB ladies battling endometriosis. It sounds like you really need to be your own health advocate and hopefully find a Dr who is on the same page.

    My sympathy for LD is limited, unfortunately, in light of her raging narcissm and generally horrible track record. Doesn’t her condition make her a terrible candidate for ivf egg harvesting? I also really hope she doesn’t adopt either – if she can’t handle a dog, how can she handle a child???

  35. Ozogirl says:

    What a tough decision to make at her young age and I hope it ultimately relieves her pain.

  36. MoAnne says:

    I feel for her. Endo is the worst. I have it, too, and it’s been painful. But, I count my blessing because the people on this board have had much worse problems than me. I’m avoid surgery for now, but who knows what the future holds. Blessings & hugs to all the survivors.

  37. Kelly says:

    If it were men who had to cut out parts of their reproductive organs, endometriosis would be cured tomorrow.

  38. Spike says:

    I had fibroids, profuse bleeding (down a pint every month), tipped uterus, etc. I had a gynecologist who thought my mother took DES during her pregnancy (she didn’t). I had two miscarriages at two months. I could never have children. It was so painful but at a certain point I had to move past it.

    I’m not a Lena fan but I understand ad empathize.

  39. A says:

    Hysterectomies are no joke. But I do want to highlight a pertinent point here, which is that Lena Dunham, at 31 years of age, was able to have one when a lot of women would not even be presented with the option by their doctors.

    This isn’t a knock against her personally, just a reminder that economic and personal realities are so different for so many women who suffer from endometriosis and other types of diseases like it. I also don’t doubt for a second that she dealt with numerous doctors through her twenties who either never brought up the notion of a hysterectomy, or told her it wasn’t an option because she was a woman of child-bearing age who would want to have children some day. And I think it’s important to realize that she could have saved herself all of those surgeries and all of that pain, if only someone had brought up the prospect sooner.

    I hope she recovers well. I also hope that more women are able to bring up the option with their doctors now. And I hope that the women who do are met with kindness and compassion from their care providers, instead of dismissal and derision. Every woman deserves to live in good health and deserve to have people who are committed to providing them with the best care they can.

    • Nicole Savannah, GA says:

      You said it so well. I was saying the same thing when I read all the different treatments she was even able to try.

    • L says:

      Read up on endometriosis. Most women take an average of 8-10 years for proper diagnosis and many have multiple surgeries. Lena has been to my endo doc who is one of thre best. Even with top surgeons who only treat endo you can have multiple surgeries. It’s currently the ‘ gold standard’ of treatment. There are no clear treatment guidelines for endo and no rela $ behind research. It’s terrible. 1 in 10 women suffer with it. And that suffering is awful. I had two miscarriages, several visits to ERs where they think you’re an addict, and finally for me surgery. I only have one ovary left. I lost control of my bowels multiple times in public., cyst ruptures, terrible periods etc This disease is no joke and becomes systemic if not treated. By the time I had my surgery, I was bed ridden. I’m 100% recovered. But it is no joke.

  40. Tea says:

    In relation to Jack-in the article, in makes it sound like she had it before the break up. Fall/winter her pains were really bad and she was in pursuit of relieving that pain with lots of different avenues while she and Jack were growing apart. She says she knew at this time that consciously this was taking a toll on the relationship. She also says that “many many things aside from her uterus” split them up, and she sort of already knew they were over. I’m guessing she knew he was already falling for Lorde.

  41. ParlerBleu says:

    Just want to send my love and support to all of you amazing women. I can’t imagine the pain, both physical and psychological, that endo and other reproductive health issues discussed on this thread inflict on your lives, but your strength in the face of it (in addition to our backward, misogynistic healthcare system) is inspiring.

    All of the 🤗 in the world to you unfathomably strong women!