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4 Women Tell Us How Birth Control Helped Or Hurt Their Endometriosis
Endometriosis, a condition where uterine tissue grows outside the uterus and sheds monthly, as if it were a period, can cause a wide range of symptoms, including serious pain, bleeding, problems with organ function and issues with fertility. There's been more awareness of endometriosis over the last few years, but it still remains under the radar — as does the fact that treating it can be a long and very individual process. Using birth control can treat endometriosis, but, as four women who've managed their endo through birth control tell Bustle, is that this regimen can often involve a lot of trial and error to get results.
"Hormonal contraceptives containing both estrogen and progestins — such as the most common types of birth control pills, as well as the contraceptives like the hormonal vaginal ring and the patch — are often prescribed to people with endometriosis," research scientists at period-tracking app Clue tell Bustle. Everything from the combination pill to progestin-only options like the mini-pill or the hormonal IUD can help manage endometriosis.
However, Dr. Gerardo Bustillo, an OB/GYN at MemorialCare Orange Coast Medical Center, tells Bustle that endometriosis often has multi-stage treatments: First birth control is used, and then other options are explored. "The goal of treatment is to relieve any symptoms, pelvic pain and infertility," he says. If contraceptives don't work, he explains, drugs that cause "a temporary menopause-like state by sharply lowering estrogen levels in the body" are the next suggestion, followed by surgery. "In patients with recurrent symptoms who have failed medical treatment and are not interested in future fertility, definitive surgery including hysterectomy and removal of both ovaries is recommended," he says.
Four women tell Bustle about their experiences with endometriosis treatment using birth control — and what happened afterwards.
1Ellie, 26
"I think it’s hard to write about endometriosis treatment because everyone is so entirely different and responds differently to hormones. We each have an individual hormonal make up. It's the same way one pill is good for one teenager, it might make the other one nauseous and sick.
"I’ve tried about 18 different hormone treatments (last count) for my severe stage 4 rectovaginal endometriosis, all of which were various forms of birth control and induced artificial menopause.
"When I was 17/18 and prescribed them, they would generally work for three months or so then I would start bleeding like a motherf*cker again. So I have tried 18 different combinations — it gets confusing because your bones start to weaken if you don’t have any estrogen at all for a sustained period of time, so then you have to add estrogen in, but not too much that it causes a period."
2Jayne, 39
"I had struggled with my periods ever since they started, but I didn't realize that it wasn't normal to suffer so much so just carried on with things. I went on to the pill when I was 15, and changed between that and the Depo injection over the course of 10 to 12 years. I then came off the pill and my periods returned and were just so painful.
"I didn't do anything about it until my sister mentioned that she really struggled with blood loss during her periods and that she had been prescribed mefenamic and tranexamic acid for the pain and blood loss. She gave me a couple of tablets to try and they helped, so I went to to the doctor and they prescribed the mefenamic acid. After a while the acid stopped working and it was recommended that I had a coil inserted to stop my periods.
"I eventually had to have a laparoscopy where the endometriosis was diagnosed — this was in June 2010, a good 15 years after my symptoms first started!
"Following the diagnostic surgery, I was then prescribed Prostap, which brings on a medically induced menopause, and this tidied up my endo until they operated in May 2011. This surgery was 5.5 hours long and they had to separate my bowel, bladder, womb and rectum, plus take away part of my vagina. There was also a 25% chance of me having to have a stoma.
"Following the surgery I had around three months without pain, but the endo returned along with the adhesions from the surgery causing pain, so I was put back onto the Prostap. I was on Prostap for a good few years to the point where the HRT was causing high blood pressure, so had to stop having the treatment. I was then moved onto the Cerelle pill but this also created issues with headaches, so had a further laparoscopy and the coil fitted at the same time."
3Edwina, 33
"When they suspected endometriosis, I was recommended the combined pill (which I couldn’t take because I also get migraines with aura, so the estrogen is a stroke risk) or the Mirena coil (which I didn’t go for, but wish I had in retrospect as it would have been nice to get the IUD inserted when I was already under anesthetic). If I remember correctly, the thought process was to start me on hormonal contraceptives and see how I responded to them first before doing diagnostic surgery — if the pill worked for symptom management, that would be a kind of diagnosis confirmation in itself, and also perhaps mean no further action would be necessary.
"As it has turned out, I probably don’t have endometriosis — after a polypectomy for uterine and cervical polyps, my symptoms cleared up significantly, so it seems more likely that I had unusually symptomatic polyps."
4Sharon, 31
"I started taking hormonal birth control when I was 22 as birth control, and I’m 31 now, taking birth control primarily to treat my endometriosis. I wish I knew then that (as far as every doctor I’ve spoken with), there’s no medical benefit to having a period. I did it four years ago to manage my endometriosis and PCOS, and I’ve been symptom and pain free, not to mention not having a period since the previous presidential administration.
"The trial and error with managing my endometriosis started even before diagnosis. Then, my periods were just beyond awful, but the emotional upheaval surrounding them was volatile. While perhaps a separate issue, I began to link my more serious episodes of mental health crisis when I had my period. It is a special type of uncomfortable to ask for a maxi-pad while you’re getting checked into an intensive inpatient facility.
"Miraculously, at age 26, we cracked the code. My psychiatrist realized that my anecdotes about tampons and therapy aligned, and she recommended talking to my gynecologist. That gynecologist was very forward-thinking and was treated both my mental health complaints and period pain as something serious. Sadly, that’s not always the case for most women, and they’re told to suck it up.
"He recommended a diagnostic uterine laparoscopy combined with a dilation and curettage. The surgery was a (relative) breeze but was beneficial because I finally knew that I wasn’t just whining about my periods—I indeed had endometrial tissue growing outside my uterus. With that confirmed, I started continuous birth control in August 2015, and haven’t looked back.
"I’ve learned that there’s more to birth control than just the name as a function, and it’s given me a lot of body empowerment as I can regulate my own schedule."
If you suspect you have endometriosis, talk to your doctor about your symptoms and your possible options. It's so important not to write off a painful period as "just how periods are" — it really can be a signal of a greater health issue.
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