New to forum

[jmoss]

Hi new here and feeling very down today. Seen doctor/gynecologist an he recommend medically induced menopause. Took 4 injection which did take away the pain but my emotions where all over the place so he did not recommend I continue with this. AS I had no symptoms he advised that I had endometriosis and because of my age (44) and not wanting any more children recommended a hysterectomy.

I am on with waiting list but in northern Ireland is 2 year wait. I am very emotional still, very fatigued and experiencing symptoms a lot more now. Most problems seem bowel related with bloating, difficulty moving motions, back ach and during period great pain in this area! I also have very heavy periods and really bad PMT!

I'm just bit bewildered and lack support from professionals is tough! I new to all this and symptoms are getting me down, are they normal? I'm crying almost every day and worried....

[pinkpunkp]

Hiya, I feel for you on the bowel related symptoms thing, for me I'd say that they are normal in my experience. I think in this past year I've tried everything to manage my symptoms (induced menopause, IUD, antiinflammatory meds, painkillers) but none really work & some (IUD) have made them worse. I haven't been offered surgery & I doubt I will since most of the endo is in my bowel/bladder & I doubt they'd wanna risk damaging the organs plus I have a high BMI so they won't really do surgery unless it's a last resort. I hope you find some relief & you get your surgery soon

[Fabbird]

Hi, sorry to hear that. I too find my bowel is very slow and this adds to the discomfort. Some years ago I discovered Movicol, which has really helped. It's a laxative which works simply by retaining more water, so keeps everything soft (sorry if tmi). Doesn't get absorbed, doesn't affect the gut rhythms. Makes me much more comfortable if I take it every other day.

Of course better to up fruit, veg, water exercise, but I had already gone as far as I could in that direction.

I hope you find some help. Are you under an endo specialist? As far as I am aware hysterectomy alone is not likely to be enough. I believe you need someone with the skills to remove the endo too. That can be tricky if it's around the bowel. Good luck.

[Fabbird in reply to Fabbird]

I just looked up NI and there's a specialist endo centre in Londonderry.

bsge.org.uk

Hope that helps.

[jmoss in reply to Fabbird]

Thanks for this the symptoms are very strange at times slow bowel pain pins needles feeling bum low back and legs pelvic pain also ... the stress of not definitely knowing I was advised that as I had no pain when on injection it's most likely endo! Just seems at times that I'm a tad crazy therefore try to power on and not mention it!

[Fabbird in reply to jmoss]

Have you not had a laparoscopy? That's the only sure way to diagnose endo. If not, then push for one. You are not crazy. If you haven't had a confirmed diagnosis then how can you consider treatment options? And you need to do so, because endo just gets worse if you leave it.

I also have the strange bum pains, which shoot down my legs and sometimes make it difficult to walk. I'm afraid it's all part of it.

[pinkpunkp]

I've never been offered a laparoscopy (probably due to my weight & the fact they think my symptoms aren't that bad), I was diagnosed through MRI though I did have surgery to remove my appendix a year before I was diagnosed & a year later found out that the pathology reported endometriosis in the appendix. At this stage I doubt I'll get surgery, used to putting up with the symptoms now anyway.

[lauraca1]

Hello, I'm so sorry you are dealing with this. Have you ever had deep excision surgery to remove the endometriosis? Your symptoms are right in line with endo. I am one week post op for this surgery and I can already tell the difference. I had terrible bowel issues as well and they found my colon and ovary fused together and stage 3 endo. I've struggled since I was a teenager and finally have an endo specialist that is listening! Please read this book. It is amazing and so accurate with treatments and the way endo can affect our lives physically and emotionally. amazon.com/dp/B017US3UBK/re...

I hope this helps and you feel better soon! There is hope

[jmoss in reply to lauraca1]

No surgery at all, just medically induced menopause and because I did not have symptoms whilst on the injections (plenty side effects though but no painful bowel movements and heavy period) the doctors working diagnosis is endometriosis, next step as advised by the dr is hysterectomy which I am currently on the waiting list for.

I am just so low at the mo and the dull pain I feel in my back, hips, pelvis and deep in side seems to happening more often now!

thanks for advice will defo order book!

[lauraca1 in reply to jmoss]

Please do! This surgeon, Dr. Seckin in NYC is amazing and he wrote it. He's an expert in endo and has a whole chapter on circumstances when a hysterectomy is beneficial. He doesn't usually recommend because endo can still grow regardless unless it's excised by a skilled surgeon. He talks about how low the numbers are in terms of skilled endo specialists in the world but they are out there! I found one about an hour from my town and it was well worth the drive