My Hysterectomy Didn’t Cure Endometriosis
1 day post-surgery
My Hysterectomy Story
From the age of 11, I had painful periods. I started birth control around 16 years old for long, heavy periods, and it wasn’t surprising because my mom struggled with the same thing. In her 30s, we would come home from school, and she would be doubled over on her bed in pain. She was understanding and would offer Tylenol or a hug if I wasn’t feeling well. Still, since she was going through it, too, it was considered “normal” in our house. In her late 30s, my mom had a hysterectomy and declared it should be a right of passage for every woman. Her life was changed. I wish that a hysterectomy also cured my endometriosis symptoms.
In college, I started having painful breakthrough bleeding on birth control. Every so often, I would get fed up with the bleeding and would go see a gynecologist. They would test me for STIs, order a pelvic ultrasound, and recommend new birth control. I tried them all. If they asked me about my pelvic pain, they would refer me to some book on how to improve my intimate life or suggest sex therapy. I started to feel shame in this area, so I stopped telling them about the pain.
Shortly after I got married, I started having 3-week long periods. I was missing work and bleeding through pads and tampons. I started the pelvic ultrasounds all over again. The doctor sent me a book in the mail with my options- uterine ablation or hysterectomy. I was 23 and knew I wanted to have kids, so I threw it away and carried on.
When I was 29, I finally got fed up with birth control. I was having terrible migraines, struggling with weight changes, and I was having thoughts of self-harm. I really wanted to give my body a break. For about 6-8 months, I felt absolutely amazing. And then it hit me. The painful periods returned with a vengeance. I was having heavy bleeding, clots, nausea, and diarrhea with periods and cycles ranging from 14 to 41 days. At this time, I was also trying to get pregnant, so I went to my doctor, who did another pelvic ultrasound and told me everything was “normal,” and it was too early to seek fertility help, so I just waited it out. Shortly after that, I got pregnant and felt great again.
At my 6-week post-partum check, my provider recommended that I try an IUD. I hadn’t stopped bleeding since the birth, so I decided to give it a try. I bled like a faucet with horrible cramping for 3 weeks. Against my provider’s recommendation to wait it out, I had it removed and tried several different types of birth control. Just like before, I didn’t tolerate any of them. If my symptoms resolved, I was depressed, anxious, and thinking of harming myself. If I felt mentally stable, I was bleeding and having a ton of pelvic pain. I was bleeding so often and experiencing so much pelvic pain that my intimate life was completely gone. When my daughter was 18 months old, I was in a horrible place physically and mentally and told my provider I was done. I was ready for that life-changing surgery my mom had. I asked if I could have endometriosis because I had every symptom. She said yes, but we had exhausted every option aside from a hysterectomy. She asked me several times if I was done having children, and I was sure I was. I had always dreamed of having more than one child, but I couldn’t imagine going through the baby phase again with how I was feeling. I wasn’t even sure how I could get pregnant with just 7-10 days without bleeding each month and barely being able to tolerate sex.
I asked for a referral to the best surgeon for my condition. I went home and did my research, thinking that I had asked all of the right questions. I asked my surgeon if she would remove the endometriosis and if she would look everywhere for it. She assured me she would and asked me again if I was sure I was done having children. I knew deep down that I would regret my surgery and wrote myself a letter outlining all of the reasons why I made that choice. I went forward with the surgery at 32 years old and felt amazing for about 3-6 months. And then, one day, almost all of my symptoms returned. It was like I was having a full-blown period without the bleeding.
When I went back to my provider to discuss why the surgery failed me, she gaslit me. “You shouldn’t be having cramping. You don’t have a uterus.” I felt like she thought I was drug-seeking. I was taking so much Tylenol and Advil that I was concerned about getting stomach ulcers. As I was crying in her office, grieving the loss of my fertility to a surgery that didn’t help me, I was offered more birth control and antidepressants and sent on my way.
Around that time, my sister was struggling with recurrent miscarriages, and we were learning more about endometriosis. I watched the documentary “Endo What” and learned about excision surgery. I cried in my living room as I discovered that I had the wrong surgery for my symptoms. I was angry and devastated. I went on to have excision surgery with a Nancy’s Nook vetted doctor and felt so much better.
Here are 5 things I learned after my hysterectomy for endometriosis:
A hysterectomy is not a cure for endometriosis.
The gold standard of treatment for endometriosis is excision surgery. Removing the uterus does nothing for the implants, and even if the ovaries are removed, the implants make their own hormones, and patients can still experience endometriosis symptoms.
Hormonal changes can happen after hysterectomy, even if the ovaries are untouched.
Post-hysterectomy, I’ve experienced vaginal dryness, low libido, weight gain, difficulty losing weight, and mental changes, all consistent with peri-menopause. I have two healthy ovaries with decent AMH for my age; however, all of the symptoms are there.
You can still get a “period” after a hysterectomy.
Post-hysterectomy and post-excision surgery, I still have ovulation and period symptoms, including bloating, ovulation pain, cramping, and lower back pain. However, I am happy to report that they are much better and shorter in duration than before.
You may still need to address pelvic pain and bladder issues post-surgery.
After years of living with pelvic pain, my pelvic floor has a lot of tension. Excision surgery helped immensely with my ability to enjoy sex. Still, pelvic floor physical therapy has been the most essential factor in improving my sexual health and bladder and bowel function.
Grieving the loss of your uterus is very real.
As soon as I started feeling better, I wished I had more children. I had a hysterectomy entirely- informed about how it would impact my fertility. When I made the decision, I felt I had no choice if I wanted to live a normal life. A hysterectomy didn’t cure my endometriosis, but excision surgery gave me my life back. Every time I see a pregnant friend or family member, I grieve the loss of my ability to carry a child again. With every peri-menopausal struggle that I have in my mid-30s, I kick myself for making the wrong decision to have my uterus removed. I am angry with the pelvic pain specialist who told me that this was the correct procedure for my symptoms and with the surgeon who thought she was competent enough to operate on endometriosis. I feel angry with myself for not finding the right answers.
Find Support for Endometriosis
I’m Sarah, a registered dietitian specializing in endometriosis. As someone who struggles with endometriosis and has had the wrong surgery, it is my mission to bring awareness to the disease and help guide others toward the right care. I help patients find nutrition solutions to improve their symptoms before and after excision surgery. If you are struggling with endometriosis symptoms or are considering surgery for endometriosis, please check out the following resources:
Nancy’s Nook Endometriosis Facebook group
