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7 People With Endometriosis Tell Us Their Best Pain Relief Tips

Photographer, Basak Gurbuz Derman/Moment/Getty Images

Coping with endometriosis requires more than just an ibuprofen and a hot shower. Endometriosis is so painful because it causes uterine tissue to grow outside the uterus, where it behaves like a period and sheds every month; without anywhere for these cells to go, it hurts. It's like "having a medieval torture device inside you" or "being stabbed with a thousand knives," people with the condition say. Pain management tips for endometriosis can involve everything from surgery, heating packs, and diet changes to CBD oil and hormone therapy.

Estrogen-blocking drugs are often the first prescribed treatment. "Treating endometriosis with the elimination of female hormones and rhythms has many associated problems and many failures," Dr. Felice Gersh M.D., an OB-GYN, tells Bustle. "Unfortunately, though fairly successful in the reduction of pain, taking away a young woman’s hormones is both unpleasant and potentially harmful to her health."

Surgery to remove the cells growing outside the uterus is another potential treatment, but Dr. Gersh says it can have complications, create scarring, and potentially not be beneficial. Acupuncture, meditation, hypnosis, pelvic massage, cannabis, and non-steroidal anti-inflammatories are also recommended for dealing with endo, as is the drug Elagolix, now marketed as Orilissa, which was approved by the Food & Drug Association (FDA) in 2018.

If you have endometriosis, you may have tried every classic remedy, but people with the condition tell Bustle that everybody's experience different — and that sometimes not even the most drastic treatment takes away all the discomfort. Here are tips on managing endometriosis pain from seven people with the condition.

Meghan, 28

"Excision surgery is the gold star treatment for endometriosis, which I was lucky enough to have in 2015 and it gave me my life back. But pre- and post-excision surgery, the following treatments have been effective for endometriosis pain: topical and oral CBD supplements; CBD topical patches; herbal supplements; heating pads; and eating an anti-inflammatory diet. It's important to know what your body can and cannot handle and what makes flare-ups happen."

Diana, In Her 30s

"I've gotten used to the pain over time and sometimes will use a heating pad, for the cramps and also the pain that radiates down my leg. I try not to take too many drugs but if it gets really bad I might take an Aleve — that's only when it's too painful to stand.

"If your cysts get too large, doctors may recommend draining them. That sometimes alleviates the pressure and some of the symptoms for a while but it's impossible to know whether the cyst will come back and how large they will get. Draining can sometimes be medically necessary but is not a permanent solution, sadly."

Erica, 36

"Laparoscopy for clean-up, birth control to suppress hormones, heating packs and ice packs, and massage. Avoiding sexual intercourse and bowel issues like getting constipated or diarrhea can also help. Eventually, I had a hysterectomy because I ended up getting adenomyosis, uterine cells inside my uterus wall, and was bleeding constantly, every day — even with two birth control pills at once."

Alyssa, 28

"Surgery gave me an official diagnosis and got rid of some of the symptoms and pain areas (particularly the random pains behind my tailbone). The clinical trial for clinical trial for elagolix worked for a period of time but then unwanted side effects started kicking in, like changes in mood, headaches, and some pretty serious light sensitivity.

"Most people can be on birth control to help manage the pain but since I have migraines with aura that’s not an option for me. The thing that has given me the most information and relief is doing the DUTCH test and working with a hormone specialist to manage my estrogen levels. Taking magnesium, and a few other supplements recommended based on my results, has started to really help ease some of the pain monthly."

Tara, 31

"I have had three laparoscopic surgeries, in 2009, 2012, and 2019. I notice a significant difference in the quality of my life and well-being after the procedures. After my 2012 procedure, the endo went into remission. I had your run-of-the-mill period for years, and then in June 2019 when I got my period, I immediately knew the endo was back.

"I used warm and cold compresses for days on end to alleviate the symptoms. Nothing actually takes away the pain, but Aleve can help take the edge off and I have found that my Nuva ring has helped as well. It takes a few months for my entire body to get back to normal after the procedures even though the healing time is just a few weeks."

Jacklyn, 26

"My endometriosis symptoms started at age 14 and mainly revolved around having very heavy menstruation and painful cramping, but the worst symptom was chronic UTI-like pain that wouldn’t go away and was left unexplained by doctors. Treatments I have found helpful include changing my diet and limiting red meat, alcohol, caffeine, and other acidic liquids or foods.

"I had a laparoscopy in 2017 that got rid of the scar tissue webbed on my lower abdominal organs that caused slight internal bleeding. A year later when the UTI-like symptoms didn’t stop, I started receiving bladder treatments. Bladder treatments are in-office procedures where the patient is catheterized and then have their bladder pumped full of numbing solution and antispasmodics. Even with these procedures and diet changes, I still experience chronic pain."

Olivia, 23

"The most effective treatment thus far has been going through menopause. After my laparoscopic surgery (when I was diagnosed with endometriosis), my gynecologist put me into menopause by giving me Lupaneta injections every three months. The injections completely shut down my reproductive organs. While there were negatives to being in menopause at the age of 21 (hot flashes, mood swings, and dryness), it also was very effective because nothing was going on with my reproductive organs to cause my pain. I had no pain for the first time in years.

"Sadly, it's not recommended to [take Lupaneta] for more than a year so then I had to come out of it. Coming out of it has been tough because the pain has come back. The hope with going through menopause was that it would reverse the hormone causing my endometriosis, and so far it seems that it hasn't.

"On the other hand, my IUD (Mirena) has been somewhat effective, but the first six months of having it was hell. I bled nonstop for a month and it made my cramps incredibly worse plus amplified my mood swings. The Orilissa has been okay; I've only been on it for about three months. I can say that I have noticed a slight decrease so far in the intensity of my cramps."

Expert:

Dr. Felice Gersh M.D., OB/GYN