The more I learn about endometriosis, the more I wish I had become informed sooner. As I mention when I cover these stories, I used to have periods that were so painful that I had to work from bed. (They’ve recently returned but I’m 45, they’re not going to stick around for long.) While I haven’t been diagnosed with endometriosis, my symptoms fit. Celebrities are speaking out about their experiences with the condition as part of endometriosis awareness month. We just heard from musician Halsey, who said that her periods have affected her career to the point where she had to tell the men around her, who couldn’t deal with her needing to take time off, to “suck it up.” Other celebrities who have the condition include Lena Dunham, Julianne Hough, Daisy Ridley and Jamie King. Padma Lakshmi, who has been open about suffering from endo, recently spoke to People Magazine. I didn’t know that she co-founded The Endometriosis Foundation of America nine years ago. Padma said that she had a host of problems that she wasn’t aware were due to endometriosis until she was diagnosed 36. She emphasized that if you’re in bed for more than two days when you have your period that it’s important to get a professional opinion.
“Once a week, every month, I was bedridden,” the Top Chef host, 47, tells PEOPLE Now. “I got my period when I was 13 and didn’t get diagnosed until I was 36. That’s 23 years, 12 months a year, 12 weeks from, you know, that I was missing at volleyball practice, the school dance, midterm exams, helping my mom cook the family meal. All these things that’s part and parcel of being a teenage kid.”
Since March is Endometriosis Awareness Month, Lakshmi is hoping to bring attention to what she calls “a very isolating disease.”
“No one wants to talk about their period. It’s not my nature to go on TV and talk about my vagina, but it was such a good cause and I saw how much better my life was after I had surgery and got the proper treatment. I was like, ‘Oh! This is what normal people feel like,’” she says.
Lakshmi, who co-founded of the Endometriosis Foundation of America in 2009, also shared her experience and the common warning signs.
She explains that if, during your period, you have heavy bleeding, “such bad cramps that over the counter medication is not taking care of it, if your bra size goes up a cup during that time” they could be signs of endometriosis.
“I had headaches, I had numbness in one leg, I had lower back pain, I had all kinds of digestive problems, and a lot of time they just tell you that you have to grin and bare it,” she says. “This is our lot in life because we’re girls and we have babies. Pain is your bodies way of telling you something is wrong.”
Lakshmi also urges women to “listen to [their] body.”
“If you are down for more than two days, if you can’t go about your business for more than two days, to work, to the gym, be with your family, cook, see your friends, you should seek professional help,” she says. “And don’t just go to your gynecologist – look up a specialist. Someone who specializes in PCOS, fibroids and endometriosis because those are all ailments that have to do with the female reproductive system.”
Let’s take a moment to celebrate what complete bosses we are, because an advocate just reminded us that if we’re in bed for more than two days a month we need to seek help. Can you imagine if there was a condition that put men in bed just one day a month? If women made up in the majority in power, would we be trying to limit access to the medication for that condition?
I do have numbness and digestive problems too, I’ve had them for years, and no doctor has ever suggested it could be endometriosis or related to menstruation. I need to look into this. I also thought that just going to my gynecologist was enough, and that it was normal to be in this much pain. This job teaches me something every day (and it’s not just the latest trends in hair and fashion, although I love learning about that stuff).
photos credit: WENN and Backgrid
I am happy there’s this conversation, I haver recently read it can take up 6-7 years for a woman to have the right diagnosis.
I do not have it, luckily, but I have enough experience with doctors telling me it’s nothing, all you need to do is to relax, because it’s just stress.
Stress and a 7cm fibroid.
I am like Padma diagnosed at 36. I was pushed on the pill rather than investigating why I have super heavy periods, migraines, pain, digestive issues. I also have a very low BMI and am taller (statistically linked to some genetic versions of the disease) But I caution, women come in all shapes, sizes, ethnicity.
I dreaded my period my whole life in a way my friends did not bc it is very difficult to go to work and run meetings when you fear bleeding accidents and are hiding pain.
I most likely could of had kids in my 20s but was too destroyed internally to conceive by the time I was diagnosed.
Please be an advocate for yourself, fire doctors who tell you it’s in your head, get second opinions. I give a hug to all ! I know this disease messes w our relationships and quality of life. Hang in there. You are not alone.
Go Padma for cofounding the organization! PS her new Mac makeup line is awesome.
Great for women of all skin tones.
Just to add: if you are diagnosed with PCOS, fertility issues, or basically any reproductive problem, you should strongly consider seeing a genetic counsellor. Carrier status for some inherited genetic disorders present as reproductive problems in women.
Source: I am a carrier for Fragile X, an inherited intellectual and behavioral disorder (think ASD and Downs rolled into one). I was diagnosed with PCOS, but after my son was born with FX, they realized the PCOS was caused by Fragile X-associated Pre Ovarian Insuffuciency (FXPOI). We didn’t know I was a carrier until my son’s diagnosis. One in 150 women are FX carriers, but only one tenth of those women know they are. FX should be as well known as ASD, but it’s not. It’s unfortunate many OB/Gyn’s don’t even know about FXPOI.
I haven’t heard of the bra size thing, that happens to me every month, they get hot and heavier. I’ve been diagnosed with endometriosis for almost 10 years though. I’ve had two surgeries for it and the second one found tissue all over my lower colon, that was the cause of my GI issues, they didn’t clear up completely but it did help a lot. Also all over the back wall of my uterus and on muscles or ligaments in my pelvis that had to be snipped. Don’t put off going to the doctor if you experience any symptoms, esp pain, don’t let anyone tell you to “suck it up” or that you can’t handle pain.
I’m loving all this Endo attention, it’s about time.
I’ve got a friend who had a tentative diagnosis of endometriosis after years of disabling pain. She asked her doctor if that could be what was causing the pain and discomfort she was feeling in other parts of her abdomen, not just her pelvis. He (of course it was a ‘he’) scoffed at her that unless she spent most of her time standing on her head, there was no way it was endometriosis in her middle and upper abdomen.
She switched doctors, and had two surgeries to remove dozens of lesions from endometriosis, including lesions and scar tissue all around the area that had been painful to her month after month after month, for years. She is still on medication to control it, but at least the surgery relieved the worst of it.
Yeah, if you’re in pain, seek help. And if your doctor is dismissive, or discounts your pain in any way, find a new doctor who is willing to a) listen to try to understand what you are experiencing b) perform tests to see what may be causing your symptoms and c) does not scoff or dismiss what you are experiencing. Even if it’s not endometriosis, pelvic and abdominal pain is not something you should just have to deal with simply because you are a woman.
Well, we are too busy developping new, improved verison of Viagra to care about all those lady stuff. Samantha Bee did a great subject on that last week on Full Frontal, it’s called “The history of women’s pain”.
My pain starts about a week before my period and doesn’t end until around the time I ovulate. I have maybe just over a week of pain free life. My period (as I recognise it is super heavy and lasts maybe 3 days). Thereafter I get this watery slightly tinted discharge thats so heavy I have to wear a pad during the day. That doesn’t go away until ovulation. I already have a history of fibroids and have had them taken out twice.
Despite this my doctor insists that I just keep using my current management method (diet, vigorous cardio and lots of pain killers). He refuses to even discuss a hysterectomy. My previous doctor was the same.
They don’t realise how much it takes to be functional despite this burden. Neither do most people (women included). They think that because I am going through the motions of life that it can’t be significant pain.
Consult other physicians. See what other options are out there for you.
I suffered with fibroids for a long time tried different things and finally had a hysterectomy. Surgery was always an option.
How old are you? I have had similar issues with doctors refusing to do a hysterectomy. So frustrating.
Please take yourself the time to consult a specialist, even if it’s not endo, they might find something else. And even if you have to travel to go there, I would strongely recommend you to do so because a doctor who ignores this symptoms does not take you seriously.
This painkillers do damage your kidneys badly on long term plus the constant pain effects your body in more ways than you are aware at the moment like you can end up with back problems and bruxism which can lead to horrible headaches due to the tension your muscles are under whilst you are suppressing the pain.
I’ve been in this condition with only one pain free week per month for round about 15 years and then due to the other symptoms the pain became more or less constant and culiminated several years ago. This sort of pain doesn’t go away from ignoring it, it worsens.
Take care of yourself, you are worth it.
What worries me always most, I’ve never met a chronicle pain patient, particularly women who haven’t tried to tell doctors for years about their pain and ended up being ignored. It is not that we are sucking it up, but we are being ignored.
keep going to different doctors until you find one that takes you seriously and is committed to finding the issue and the solution. If you are comfortable with it, try having a transvaginal ultrasound (I was expecting it to be so much worse than it was, but it was surprisingly relatively okay). The ultrasound can (often though not always) reveal possible cysts, fibroids, etc, in your ovaries or tubes, which can accompany endo or other sources of pain. Ask a gynecologist to palpate your ovaries to see if they feel irregularly sized (such as from a cyst, or cysts) — he/she can do this non-invasively just with their hands on your abdomen. Whatever you do, don’t give up from trying to find someone who will take your pain seriously and work on treating it. I know how hard, unfair, and exhausting it is, and how much to ask it is (financially, emotionally, time-intensively, etc!) of someone whose bandwidth is already being taken up just to deal with the pain day to day. But keep fighting and when you find someone to take your health seriously, you will get so much more of your life back. The luxury healthy/pain free person’s luxury, of getting to wake up every day taking good health for granted, will change your life and be the best thing that ever happened to you.
I am crossing my fingers for you!!!
I was plagued by ovarian cysts and fibroids. I had multiple surgeries ending up in a hysterectomy and once I recovered I never looked back. You tend to get used to putting up with the pain, niagara falls periods, etc. but once you’re pain-free you wonder how you ever stood it for so long. Hopefully you can see a specialist who can put things right because bandaid solutions just won’t work and you deserve to live a better life. Wishing you all the best!
Your pain pattern is the same as my daughter’s. After failure of escalating over the counter and then prescription management, we got a referral to my ob/gyn who agreed it was time for a laparoscopy. At 15 years of age he had over one dozen implants the needed to be cauterized- some could not be ( like the larger one on her ureter ). A surgeon doesn’t always find all implants, no matter how well they look. She has been taking contraceptives to suppress ovulation, which helps implants burn out bc they aren’t cycling with monthly hormone fluctuations. She still has pain, but her last endoscopy was clear. She found a device called “Livia”- out of Isreal- it’s like a TENS unit for uterine cramps. Adhesive pads and a small unit worn around the waist. It helps her quite a bit, and results are really quickly achieved.
https://mylivia.com
Order extra pads and wires, as adhesive only lasts so long and wires (like any wires) can fracture. I hope this helps.
I had fibroids. Nightmare. Had them removed but the fibroids kept coming back. Finally got a partial hysto – altho I had to wait until I was 40 years old bc they would’t do it “in case I wanted children”. I don’t know HOW many times I told them – not interested in kids, please remove my uterus. In any case, I can now sit in a meeting for as long as I like, wear white, have nice underwear and my life doesn’t get planned around one week of hemorrhaging every month. I feel for anyone suffering with this (fibroids and endo). And she’s right – you miss SO MUCH during that week every month.
I have talked to so many doctors about my PMS, I had one tell me I couldn’t have PMS with mirena and it was in my head (sore boobs and cramping is in my head) another tell me it was normal, etc etc. No treatment offers, no solutions. Just deal with it. I’m done having kids, what’s more is that out of 5 pregnancies 2 almost killed me and 3 didn’t make it to term. Not one doctor will for a moment consider a hysterectomy. It’s the dark ages in gynecology- and so infurinating.
Had it. Had a full hysterectomy when I was 52. Before the surgery, I was constantly anemic and the pain was debilitating. So glad that part of my life IS OVER!!
wow, go Padma Lakshmi! I am so proud and happy to see this information being put out there where women can learn from it. I know I have mentioned before that I had endometriosis very badly before I finally got diagnosed and put on a mirena. I was taking 12 advil at a time, home from work 7 days a month. One day my dad happened to be visiting when I was on my period, and he forced me to see a specialist. Pain is relative and never having had any other experiences with pain (ie childbirth, broken bones, or surgery), I assumed other pain in life was probably much worse than my pain. Then my dad told me he’d only ever witnessed pain that held a candle against mine during my mom’s very difficult first delivery –not even my brother’s haunting 3 months in a burn unit/hyperbaric chamber. That was when I realized that my DEBILITATING PAIN IS NOT AND SHOULD NEVER BE CONSTRUED AS NORMAL. Gah, we as women are taught to underestimate and undervalue our pain, over and over. And doctors don’t take women’s pain as seriously as men’s.
Great cause – shitastic dress. Wow.
I have had excruciating periods for 10 years, after 2 kids and a tubal, and the fifth gyne I saw finally said let’s just do a hysterectomy. She thinks I may have adenomyosis, which is similar to endo but it’s the endometrium growing inside the uterus wall rather than outside. Low back pain, horrible cramps, and two days of legs that feel like jelly once menstruation starts, plus pain and weakness several days before flow, and painful ovulation. And I get it every 24 days. I can barely function during that time, I’m so looking froward to the surgery next month and putting this behind me.
@Oandlomom I was dx with adenomyosis 5 yrs ago &; had a hysterectomy. took 15 yrs and so many doctors to get the correct diagnosis & surgery. I feel human again. It’s incredible to go from years of debilitating chronic pain to living pain-free. Best of luck to you on your surgery.
I have ovarian cysts and endometriosis. I had a football sized mass removed at 31 and was told at that time that I was infertile. I am now 38, and on the pill in order to avoid having my period. A hysterectomy is a complicated option for me because I was born three months premature, developed Necrotizing Entercolitis (gangrene in the intestines) and had multiple abdominal surgies in the first year of life. These surgeries left me with so much scar tissue that further abdominal surgery is a huge risk.
Being infertile was heartbreaking to hear because, at the time, my (now ex) husband and I were trying for a baby. (He has since left me for a younger women who can give him children). I have come to terms that I cannot have children and I’m currently pursuing a degree in education so I have have a career working with children. Infertility is difficult to accept (especially when people throw around adoption like it’s some sort of easy solution or is even right for all infertile peoole) but there are other ways to have children in one’s life.
I hope that, in my lifetime, there will be a cure for endometriosis. Sending love to all who struggle with this – and other – chronic health issues ❤