synetc2 karma2014-03-19 17:36:59 UTC
The key to effective endometriosis treatment is excision of endometriosis lesions through a laparoscopy. If endo remains it can cause problems no matter the remedy. This kind of surgery needs to be done by a gynecologist who specializes in endometriosis and minimally invasive surgery. It is also important to note that many women with endo also have adenomyosis, abnormal endometrial cell growth in the muscular walls of the uterus.
I can relate to this story. I was pretty much disabled by my endo for 2-3 years. I was diagnosed a year and a half ago. My first surgery was total excision of the endo, yet I still had crippling symptoms. Lupron helped a lot, but when the shots ended I was in immediate crippling pain even though I was on BC and hadn't bled a drop in over 7 months. I had constant partial bowel obstructions, severe pain, crippling pelvic, back and leg pain, periodic numbness in my lower extremities, etc, etc.
Finally I found a surgeon who was able to carefully review my records and determined I likely had adenomyosis as well. I am 7 months post partial hysterectomy along with another round of excision and scar tissue removal and I am symptom free. I still have my ovaries and I'm on no meds.
This is a disease that really requires the right doctor. It is possible to get your life back with the right assistance. While endo is incurable it can be manageable.
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synetc1 karma2014-03-19 17:49:35 UTC
While a hysterectomy doesn't cure endo it can be a very viable treatment method. Also many doctors overlook adenomyosis when many stats show many women with endo also have are adeno. For me adeno was just as painful, wreaked just as much havoc, and caused the same amount of scar tissue. It can be tricky to diagnose since just like endo it doesn't show on most I imaging. It is really symptom tracking with a specialist. Also in some women the estrogen from BC can make the endo worse. My specialist is pretty convinced that combined bC was contributing to my symptoms and endo growth. This seems to be an issue that varies woman to woman however.
synetc1 karma2014-03-19 22:05:49 UTC
I also wanted to add, based on some of the things I have read here I would urge you to get a second opinion from another endo specialist. It is concerning that scar tissue was left behind at the first surgery. Scar tissue alone can cause pain and problems, not to mention endometriosis can be underneath the scar tissue, or this could be an indication of another condition like pelvic inflammatory disease, or adenomyosis.
At this point to be having so many symptoms there is either endo left behind, adenomyosis, or another secondary condition. This is not a way to live, and there are answers out there. I live in the Dc/metro area, there are specialists everywhere, and I still drive an hour to get to the best doc for me.
To make the best of a second opinion have all previous records sent over ahead of time especially the surgery report, surgery video if available, and photos. I can't explain how relieved my partner and I felt hearing another specialist discuss what was done during my first surgery, we knew for real we new what the deal was, and what my options were.
Also, this is a tough topic, and my opinion on this is pretty radical. However, I don't feel that this quality of life is worth saving fertility. While I wasn't really considering having children, my endo cinched the deal. My uterus was not healthy, and to me it wasn't worth risking another's life over. Also, my own quality of life was so poor. My boyfriend has a family member who tried for years to have a child and she had severe endo. It was a soul crushing experience, with no quality of life and no success. Her condition got so severe her only option became a total hysterectomy and removal of both ovaries. It ended up being a godsend. She is now painfree living a normal life with her amazing adopted daughter.
I am very close to your girlfriend's age, I am turning 32 in a week. I now have energy after work, I am never sick, I can make plans, I can exercise, I actually feel 32 again. Tylenol is even magical again.
At this point I am thankful for the experience, and happy to be on the other side, and try to pay it forward to women who are trying to get there.
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