Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

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At A Breaking Point

BrittVA
BrittVA

I haven't been diagnosed officially yet, but my doctor is recommending the surgery after trying birth control. I have so many questions and feel overwhelmed.



Timeline 


-I've always had unusually painful periods. Like most people, I thought this was normal. 5 days of bleeding and every two hour tampon switch.


-November: Bled during intercourse and was in pain.


-January: Bled even more during intercourse and it was painful. Saw my doctor immediately and was treated for PID. Ultrasound showed a polyp and dominant follicle but I was told that those wouldn't cause pain. Was given Tylenol-Codeine 3.


-March: I couldn't wait until the 3 month checkup. Pain was 15 days out of the month. Decided to go on birth control.


Last week (end of June): Bled extensively during sex and it was quite painful. Went back to doctor. Pain days went down to around 5... but still taking days off work for pain. But after the sexual intercourse, I have been in constant pain. She scheduled a ultrasound and a surgery consultation. She thinks the polyp from January has grown and the endometrosis is the pain.. two seperate issues.



I didn't know bleeding was a symptom of Endometrosis?


What if it isn't Endometreosis - what's wrong with me?


When I consent to surgery, is there a possibility a hysterectomy could be done?


Will I ever have enjoyable sex again?


I thought Birth Control would eliminate ovulation and menstruating... how would there be pain still when that isn't happening?



Sorry... I feel at my breaking point. She prescribed me Tramadol and it makes my feet swell and hurt. I don't want to be on painkillers anymore, the side effects are terrible :(


KSprizzle89
KSprizzle89
Please look into endoempowered.com

I was where you were at. Birth control was terrible, I had terrible side effects. I had constant pain during intercourse. I did have surgery and was diagnosed. I had polyps all over my abdomen and was stage four. Then I found that website and took my health into my own hands. Best decision I have ever made, I'm off all medications and control my symptoms through my diet. Hang in there!
saraproblem
saraproblem
That sounds really scary! I'm sorry you're going through all of this. Your symptoms do sound consistent with endometriosis (even the bleeding with intercourse). It's my understanding that when they bring you the consent papers before surgery, you have the right to ask them to edit it. It is not as common nowadays for doctor's to take out reproductive organs without cancer being present, but it does happen. I've read that you can edit the document to say that you don't want your uterus, ovaries, or cervix removed except under certain circumstances. I'll try to find resources on that for you. I've tried birth control and still had constant pain. There are probably already adhesions and a whole lot of inflammation causing the pain. I'm on an anti-inflammatory diet that's been very helpful. Sex is still painful for me, so I'm seeing a pelvic floor physical therapist and it's supposed to help, although it's still too soon to tell. I'm also going to try abdominal massage, which can help with the pain. Doctor's often think that they are endometriosis experts, but there are very few specialists in this area. The illness affects everyone differently. I'd recommend reading everything you can on the subject and setting limits for yourself ahead of time so that doctors don't talk you into doing something you don't want to do. I feel like I got bullied into taking birth control, which I was adamantly against. Hopefully you will have more answers after the surgery.
BrittVA
BrittVA
I also did not want to go on birth control either! My ultrasound came back completely clear so no cyst or polyp would cause the bleeding during sex. I now am spotting as well.

I did join a FB group and found an excision specialist Dr. Nelson and I see him in a month. Honestly this attack has been 2weeks straight and it's unbearable. My lymph nodes are now swollen on my neck... I don't know how much more chronic pain my body can take.

Thank you so much for your alls information. I'm so scared they won't find something but I know what I'm experiencing isn't normal.
saraproblem
saraproblem
It's definitely not normal - I'm so glad you're going to to see an excision specialist! Good luck with everything and hang in there!