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Endometriosos & Adenomyosis with acute pain episodes
Hello!
I have never written a post before so please bare with me. If there are any medical professionals who read these I would appreciate some guidance. At approximately 15 I started having intense pain episodes in my lower abdomen. Depending on the severity I would also have diarrhea, would vomit and have a fever. These would always occur right before my period. Afterwards, I could easily sleep for a day. Endometriosis is in my family, at 17 I was diagnosed with it and a lap. Afterwards I was put on birth control and had no symptoms until Thanksgiving of last year. The morning of Thanksgiving and ironically the morning of Christmas I had the same 'episode's. In hindsight, the Summer before I went to the doctor for 'food poisoning' and now I think it was the start of the endo causing pain again. I found a doctor by looking for a specialist online. He scheduled a lap for January of this year. He said I had endo in my fallopian tubes and cysts on my ovaries. He put me on continuous birth control and told me I should plan on having my first child in the next 3-5 years.
A month ago I experienced the pain again. It was by far worse then I have ever had it. Two days ago I experienced it again. I went to see my doctor yesterday, he did a pelvic exam and an ultrasound. Also lately after sexual intercourse I get cramps. And two days ago the pain started during intercourse. My doctor said he couldn't see anything. Told me I have Adenomyosis (I honestly don't even know what that means) and recommended I go see a different type of doctor.
So here I am. I would appreciate any input. I apologize for the TMI. I am marrying an amazing and supportive man and it is nearly impossible to have intercourse without me feeling nauseous or cramping. Let alone the pain episodes are something I would not wish on my worst enemy.
I have a co-worker who has Endo and her doctor told her it spread to the bowel which causes her pain. My doctor didn't even mention that as a possibility.
Any feedback/recommendations would be greatly appreciated!!
Thank you!
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Forgot to mention two things:
1. I am 27 now
2. My doctor is a fertility specialist with experience with endometriosis. I think that is why he is referring me elsewhere. At this point me endo isn't causing me to be infertile (we believe).
Hi! I am also a 27 y/o with endometriosis. I am on my 8th or so referral. I would love to say once you find the right doctor it will be solved and you will feel better but unfortunately endo isn't that easy. I started symptoms at 14 and progressively declined. I had my ovaries and tubes removed at 23 and a complete hysterectomy at 25. About six months after my last surgery the pain resurfaced. I started Lupron Depot injections for 6 months. Unfortunately they did not work. I have seen a gastronologist, colon/rectol surgeon, primary care physicians, and ob-gyn specialist. I have since been referred to Mayo Clinic. I'm hopeful that there is an explaination. One word of advice from a person with similar history is to start a journal. Write down everything even when you feel its just repetition. It has helped me so much. Also that wonderful husband of yours is going to be your lifeline. Mine has stood beside me for almost 8 years and times get rough. Just always promise yourself and him that you will be open and honest about your pain and emotional needs. I'm not a doctor but I could be a supporting fellow endo sufferer if needed 🙂 good luck!
I wish you the best!! I found an endo doctor on the endometriosis association's website. I went to see him on Monday. At first he was pretty skeptical about me asking for a second opinion. He has decided to treat me. He asked me questions no other doctor has every asked me before. We are waiting for my medical records to be transferred over (which is taking forever) and then we are going to come up with a plan. Hang in there! I recently started a blog. The past few months have been absolutely horrible for me, I can barely imagine how the past few years have been for you!. I hope Mayo Clinic can help you!!
Where is your blog? I would love to follow. I hope this doctor can help. Best wishes.
I just started it today. Took me a while to write my first post. Thank you 🙂
http://lifeandendo.blogspot.com/
i personally suffered for a long time with endometriosis& Adenomyosis.everything you are complaining of fits -lupron & depo worked the best for me -you deserve to be heard & treated ,also i'd reccomend you consider seeing a pain mgmt dr -they use all types of medications ,not just narcotics
thank you! i was very dis-heartened when i wrote this. I did find a new doctor and we are having a consultation on Friday. He already told me Lupron was an option, and Danazol. He wanted me to research them a little myself and he gave me information on them. I really only need a year, as pain free as possible. We are then planning on having our family and after that I can get everything taken out (I have read with the adenomyosis that you might have to get a full hysterectomy). how long have you been without pain?
last Wednesday i was diagnosed with polyps on my uterus and cysts on my left ovary. i have had my right ovary taken out already (7 years ago) because of the cysts. Last year i was diagnosed with fluid build up on my fallopian tubes and scar tissue from re-occuring Pelvic Inflammatory disease. i am 29 and only have one child. I have had problems down there for 7 years. the PID never scared me but this new thing has scared me to the point that i actually am writing it down and letting other ppl know. it is a lot to adjust to knowing that i may have to have a doctor tell you that you have to have a biopsy and they dont know whats causing it. i have never been diagnosed with endo. but my doctor seems to think that may be what it is but we have to wait on the biopsy. if anyone has had my problems i just need advice because i am scared to death.