unexplained pain

[hannahelizabethmarti]

hiya! i've been having excruciating lower abdominal pain every 26days for over a year now. I've had 2 laparoscopys and i'm having a 3rd next week. They found out that one of my fallopian tubes hadn't formed and that I had a non-communicating uterine horn which was later removed. I was ensured that this was the cause of my pain and once it was removed I would be pain free and off of all medication.

Since then my pain has not improved at all and they put me into an induced menopause at just 19 years old. I am now having to take HRT daily and am seeing a top london consultant who says the only thing it could be is endometriosis even though they have looked for it twice already.

i've lost all hope that they are going to find the cause of my pain and i don't know what to do now.

I have been considering asking them to just give me a hysterectomy but i want children more than anything.

i know i am in a very specific situation but any advice or guidance would be much appreciated.

i cannot cope with not knowing what is going on in my own body.

Thank you in advance

[Tboag]

Hi hunny, sorry you are going through so much and at such a young age,

Are you under a bsge accredited specialist centre, ????

I've had endo diagnosed and removed and a hysterectomy for adenomyosis and I'm not out if pain, I'm due a 3rd op next week to look for missed endo and to remove overies, I'm 40 with children ,

A hysterectomy dosnt cure endo if that's what you gave you need a thorough excision job done by a specialist,

The injections you are on are supposed to be given to women over 23, how long have you been on tgem for and how long left, ????😠

[hannahelizabethmarti in reply to Tboag]

thank you for your advise, i feel at such a loss and i don't know what to do to make it better!

i've been on the injections for 6 months and on HRT for 4 months.

i've heard all the horror stories on the news about HRT and i don't want it to be on it for any longer than necessary.

i have not been given any alternative to the injections and they are acting as though i will be on them for the rest of my life if they don't find any endometriosis😩

[Tboag in reply to hannahelizabethmarti]

Are you at a a bsge specialist centre????

The injections are always supposed to be a temporary measure,

Mainly used to determine if it is hormonal related,

Has it helped your pain,????

[Hope264]

Hi do you have some friends or family that can help you advocate for yourself in these health situations? Specialists giving me such absolutes would be a bit of a red flag for me and I would possibly be seeking second opinions and putting the brakes on/ seeking extra support. Do you have a trusted GP to fall back on? I prefer female health professionals myself and those that listen to my needs. Are they listening to you, communicating in language you can understand and treating any current pain concerns? Also Endometriosis can be microscopic and the extent of endometriosis can not always dictate how much pain the woman is in, this can be, as I understand it small patches inflaming nerves. There is some good information on this forum, especially by poster 'Lindle'. Take care