I'm new here.....: Hi everyone I'm 38 and... - Endometriosis UK

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Loubielou78 profile image
5 Replies

Hi everyone

I'm 38 and have suffered pelvic pain since I was 13 due to polycystic ovaries and endometriosis, I'm now on the waiting list for a total abdominal hysterectomy and bilateral salpingo-oophorectomy......I'm apprehensive to say the very least, so any advice greatly received

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Loubielou78 profile image
Loubielou78
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5 Replies
Tboag profile image
Tboag

Hi and welcome, I had a hysterectomy last July for adenomyosis and excision of endo

Unfortunately i was still in pain after and am due another laparoscopy tomorrow for a oophorectomy and a hunt for more endo,

I'm now with a bsge specialist centre, and you being seen at a centre,???

Unfortunately a hysterectomy isn't a cure for endometreosis and you would need a thorough excision job done by a specialist in order to gain the best outcome,

The hysterectomy itself went really well and the recovery went well,

Good luck

X

Marcia71 profile image
Marcia71

Hi

I had a TAH and BSO (short for exactly the op you've described) in Feb 2015 for adenomyosis , cysts, fibroids & endo. I'm still in pain so now seeing BSGE clinic to get excision of end as hyster done by General gynae and he left it behind believing it will die off. It doesn't.

As tboag says make sure you are at BSGE centre for op. I too found the op fine and as long as you rest after you'll be back to work/or whatever else you do in 2 to 3 months

I found the hysterectomy associations website invaluable in getting me through the op so head there for more help and advice.

Good luck.

endotheline profile image
endotheline

Hi - I can't offer amazing advice. I'm a very similar age to you and also have PCOS and endometriosis. However at the moment I've only undergone laparoscopies for removal of endometriosis. What I would say is that you trust your consultant completely - any questions, however small or silly they feel, just ask him/her. They really are the experts and perform such operations very frequently. Good luck with everything xx

Nicole092581 profile image
Nicole092581

Hiya! Im sorry for what you are having to deal with. I will be 35 this weekend. Ive suffered with endo since I was 12 years old and have had 19 surgeries due to endo issuses. I had a radical hysterectomy july 2015. It was the worst decision Ive ever made!! Im still in a ton of endo pain and now I am dealing with life altering effects of menopause. It has hit me soo hard to where I wasnt even leaving the house due to symptoms being so severe. Hysterectomy for endo in most cases can make life worse. If you are at a high stage of endo ( I am stage 4) it doesn't help as its already out of your pelvic region. Then add the stress of menopause and no hormones. It hits women harder at a younge age. Have you considered having an ablation done with exsison of endo. That did help me out as periods did stop but no menopause symptoms. I was forced to have a radical hysterectomy because I had ovarian cancer with 2 recurrences. Make sure you are fully informed with all the risks/benefits and side effects of hysterectomy. Doctors dont tell us everything and how it can radically change your life ( for the worst for me).

I have met many woman in the same boat as I am in wishing they could turn back time and not have had hyst.

Im not trying to scare you just want you to see all angles of hyst. There all also women out there where its worked for them. But you need a highly trained surgeon to preform and extensive total excision of endo for best results. Not many are fully trained for that. So it starts and grows like weeds again.

Best of luck. Sorry for the novel of info!

Nicci :)

AkiBoo profile image
AkiBoo in reply toNicole092581

Hi, I am really sorry to hear the stories of endo left behind despite hysterectomy. I haven't had hysterectomy just yet but some endo was left behind due to the locations of them.

Nicci, I am sorry you had to deal with ovarian cancer as well. Are you OK now?

Can I ask you, how did you find out? Because for us with endo, it could be difficult to get diagnosed with ovarian cancer as symptoms might be similar to that of endo?

x

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