Endometriosis UK
34,097 members30,490 posts

New here: Feeling like I am out of options

For years I was not taken seriously by any doctors, the whole "its just your period, you have to just deal with it" thing. My periods would be so sever that I would vomit and black out from pain.You could see my muscles cramping through my skin so badly, I halfway expected an alien to burst out.

I had been using a cane and was pretty much unable to walk without it for two years, I also couldn't straighten up my body without severe pain. I was literally shuffling around like a 70 year old.

Finally I had convinced them to do the laparoscopy, Turns out I have stage 4 endo, it has attached to my bowls and every other organ in my lower abdominal cavity, along with reacquiring cysts on my ovaries.

So far my treatments have consisted of:

1. I was first put on Depo Provera.... bad idea...Depo had given me a year long menstrual cycle that even Hades himself would think was too brutal of a torture.

2. I was then put on a progesterone based birth control That I absolutely loved, it helped with no side effects... but it unfortunately stopped working

3. I had 3 laparoscopys within a 9 month period because the endo is progressing so quickly

4.Super awkward vagina physical therapy, I didn't even know that kind of physical therapist existed. Made even more awkward because my doctor didn't explain what she was signing me up for when she sent me to the therapist. ha

and now my only options that I know of now are lupron (which I cant really safely take because of other medical conditions) and a full hysterectomy.

I wouldn't mind having the hysterectomy, I have genetic conditions that I would pass on to my offspring, so not having children was decided years ago. But none of my doctors will listen to that. I have been to 5 obgyns and all have refused to give me a hysterectomy because they tell me I will change my mind about wanting kids. Even though they told me almost two years ago that I would maybe have a year left of being able to conceive because my tubes are so scarred over.

I dont know what to do anymore, the pain is getting worse, I have to stay in the ER every time I start my period. Uggh

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