One in 10 women around the world suffer from endometriosis, an often-painful and debilitating gynecologic condition, which involves inflammation and tissue adhesions in the abdominal cavity.
We interviewed endometriosis patient and advocate, Heidi Berthoud about her multi-decade experience navigating this condition. Heidi, who recently recovered from a major endometriosis surgery completed last year, is working to bring attention to this common, yet often unrecognized, condition.
Check out our Facebook Live discussion:
For people looking for information and support about endometriosis in the Pacific Northwest, Heidi pointed to the Greater Seattle Endometriosis Research Center, which provides support and education for women with endometriosis. On a national level, Heidi recommended joining Nancy’s Nook Endometriosis Education on Facebook which currently has over 30,000 members.
Endometriosis has been a big roller coaster for me dealing with pain and being pushed to lupron not knowing it is a chemotherapy and other pain and problems lupron causes like messing with you vision arthritis falls and bone pain and not being watched when your already anemic and your blood drops and you end up in the hospital.Then the doctors dont listen too you till something happens
Endometriosis has been a big roller coaster for me dealing with pain and being pushed to lupron not knowing it is a chemotherapy and other pain and problems lupron causes like messing with you vision arthritis falls and bone pain and not being watched when your already anemic and your blood drops and you end up in the hospital.Then the doctors dont listen too you till something happens
I’ve tried several treatments, including lupron and nothing worked. I’m currently not on anything. I had surgery in august, the endometriosis attacked my bowels. I struggle with pain especially around my period.
I have been dealing with pain for 3 years now. I mean crying on the couch for the past year and just this year a doctor said endometriosis to I did my research and found that I fit every symptom. We are now on the road to my very first laparoscopic. I am truly hoping it will work , as I am a military wife and have had the worst experience at the hospital that is taking care of me when it began to get sever they brushed me off as if I was being a pill searcher and was neglected for so long that my quality of life was the lowest it had ever been. I felt as if I were a becoming a hypochondriac . Now to find out I wasn’t this entire time is so reassuring. But not having confidence in you medical team is very unreassuring and discouraging. The hospital will not release me to seek other care until after my laparoscopic. Needless to say my experience with endometriosis has been scary.
I have been on this endometriosis ride since 2003. Before 2003 doctors would just tell me nothing was wrong. Every time I would think ok this treatment is the one something new would be thrown into the mix. I have been unable to have children. I have had my bowls and uterus fused together. I have lost both my fallopian tubes. They many jobs I have been fired from because the pain during my period was unbearable and I’d have to stay medicated in bed. And now that I’m approaching menopause I’m told that it doesn’t stop there.
I was diagnosed with endometriosis in 2002 after I had my daughter. They initially thought I had cysts on my ovaries, but when they did surgery that was not the case. The pain I had during my period was so bad, and especially pain during sex. I would even have pains while sitting and watching tv, driving my car, everywhere! Help is out there!
I started my period at the age of 7. I have been suffering ever since that age with endometriosis. It wasn’t until I was almost dying in a ER for the Doctors to finally do emergency surgery in 2007. I was diagnosed because I almost lost my life to endometriosis and ovarian cysts. I was ignored by my doctors as a child about my symptoms, but was always hospitalized with no further investigation. Knocking on deaths door is what made them do surgery. After my diagnosis in 2007 I was told I need to have a hysterectomy, I was 19. My parents insurance kicked me off my parents plan because I was too high risk. Since the age of 19 I have been battling the health system here in the SF Bay Area to find a Doctor who will not tell me to get rid of my female organs in order to treat endometriosis and ovarian cysts. We need more advocates for this disorder. Doctors need more education about these Diseases. I’m now 30 and cannot work anymore due to my severe endometriosis. My dreams and goals have been taken away from me because of endometriosis and the misinformed Doctors I have had to deal with. The San Francisco Bay Area needs more education about this disease. I don’t want any other woman to go through the living nightmares I have gone through. I don’t want to read anymore that woman who go and seek treatment for this disease are classified as drug seekers because of the minor treatments that are given don’t work. To be told you are a liar about the physical pain you experience is vile. To be told you are drug seeking when you ask for different treatment options is disgusting. Thank you for giving me a voice. I hope these real experiences help make a difference.
I am a patient suffering from various gynaecological conditions such as endometriosis, uterus didelphsys, uterine fibroids and ovarian cysts.
I have also suffered a silent miscarriage in 2017. In 2015, I was diagnosed with Uterus Didelphsys and severe endometrosis in 2016, it already spread to my bladder and currently it has spread to my uterus and ovaries.
In 2018, I was diagnosed with ovarian cysts. Having had 6 surgical procedures within 3 years, none improved the symptoms of all the gynaecological conditions I have. Over the years doctors kept ignoring my concerns in relation to my uncertainty health. I have taken countless of strong painkillers, antibiotics and antidepressants in the past. In 2017, My doctor inserted a Mirena coil which resulted to a proferation of the womb due to lack of management from the doctor. Currently, I eat healthy and live a healthy lifestyle, which have reduced the symptoms of these conditions.
I was diagnosed in 1996, when I was twenty-six years old. I was on opioids, and birth control to battle this disease. It didn’t work. I did my first Laparoscopy two years later, to relieve the pain. It was wonderful, for about four months. I still did as much exercise as possible, on top of the birth control and opioids. Slowly, it came back. Two years later, I had my Laparoscopy. Why not a Hysterectomy? I was still in my thirties, and I still wanted to try and have kids. Sadly, that was never meant to be.
The second Laparoscopy had the same results.
At the age of 42, I gave in and had my uterus removed. While I felt better, I still had issues with pain in the area, as if nothing changed.
It took a long time to realize that it was phantom pains. I also was never told by my Dr after the Hysterectomy, there wasn’t any Endometrial tissue inside of me anymore. It took me four years to find out that information from a different physician.
Eventually, I found a great interconnected place of health that isn’t Kaiser. They helped me so much with abdominal pain and learning how to treat it naturally. I was also told it propelled me into another chronic illness, Hypothyroidism. Part of it was because of fighting Endometriosis for over sixteen years. I haven’t even finished being diagnosed with everything. You can add Asthma, Eczema, Rosacea, Conversion Disorder, Depression, and Anxiety.
All I can recommend is to keep fighting, never stop!
Thank you for sharing your story, Shelley. It’s amazing how one thing can lead to another (like a snowball rolling downhill). Happy to hear that you’re fighting strong and figuring this stuff out.