Adenomyosis and referred pain

Hi, 

I have endo and had a lap to have it excised in October. This was done in a private hospital but by the lead consultant of a BSGE hospital. Went back for my post op review last month as my pain had only reduced by about a quarter post op. 

My consultant referred me for an MRI to look for deep infiltrating endo that can be missed during a lap. They didn't find any round my bowels or bladder, even though those still hurt, but did find it in my uterus so possible Adenomyosis. Has anyone else with Adenomyosis had referred pain in their back and other areas? Did zoladex/ hysterectomy reduce pain in areas other than uterus? It just seems odd that out of my lower body my uterus seems to hurt the least! I know from tooth ache that nerves are funny things and where you feel the pain isn't always the source. 

I am having an injection to shut down my uterus temporarily (so I'm presuming that's zoladex or prostap?)  and I'm having HRT at the same time to minimise the side effects. I think this is to see if the uterus is having an effect on my other symptoms. We didn't discuss after the injections the next step, but from research it looks like the only solution to Adyenomyosis is hysterectomy.

From discussions on this formum I'm really not looking forward to the zoladex and am worried it will turn me into a monster and still not help with the pain  

looking for good news stories please

[JeanOsborne]

Hi although everyone is different I thought I'd share my experience with Zoladex. The first month was hell. Started my period an hour before first injection and that was last one I had. Within in few hours I had headache within a few days had severe constipation and was put on Laxido which really helped. Also had a bad flare up and my depression reared its ugly head big time. Saying all that things then settled down and by the second injection felt better than I had done for a very long time. So the first month of hell was worth going through for the relief I got in the end . I have sine had a total abdominal hysterectomy (for adenomyosis) with removal of both tubes and ovaries along with excision. Despite a few complications after surgery if feel better than before the op. If you do get any hot flushes try evening primrose oil and sage leaf tablets , one of each twice a day as i found together they really helped. Good luck. If you have any questions with regards to Zoladex or hysterectomy please don't hesitate to ask.

[Hidden in reply to JeanOsborne]

Thanks for the tips. My dr told me I'd feel worse for a couple of weeks before I got better.  Did you take HRT at the same time? 

[JeanOsborne in reply to Hidden]

No but I'm now due to have my follow up appointment on Thursday and will be discussing what hrt I will having. Hope you're ok.

[Tboag]

Hi, I was diagnosed with endo and adeno in march last year, at that lap he excised and burnt the endo, I then had a hysterectomy with overies left in, in July, unfortunately I'm still poorly with pain in abdemen most days or groin, hip back. Not as strong as before hysterectomy, I've now been put on zolodez, 16 days ago, via my consultant at a bsge centre, and am awaiting a date for laparoscopy, where he will  check to see if I've still got any endo, and if injection helps hhe will remove overies, I've been emotional since on it, but I can be like that anyway, and my boobs have killed, just calming now, the symptoms for endo and adeno are so similar that it's very hard to tell what comes from what, but I would say out of everything my bac

[Tboag in reply to Tboag]

Back, sorry wouldn't let me finish, lol, is much better than its ever been, I had a retroverted uterus too, so adeno was defo causing my main back issues, which I had for years, how old are you?, I'm 40, so if they take overies I will go on hrt, I'm on Estelle ATM.  Good luck

[Hidden]

Glad to hear you're making progress. It does all seem a big game of trial and error - but I guess as everyone is different, that's the only way. 

So you're not on HRT now whilst on the zoladex? I'm not sure why my consultant is prescribing both when other doctors let you go through the zoladex symptoms without HRT. I do trust him though as he's one of the U.K. leading Endo experts and if it eases the side effects then that's great. Just wondered why it's the norm to not to have it. 

Yes I'm similar age to you, just turned 39, and was lucky to have had two kids normal delivery in my mid to late twenties.

Would you have been able to go away for a weekend abroad during your first 2-3 weeks after zoladex? Am due to go away, but it's not too late to cancel, but probably will be by the time I get my injections. 

Thanks for all your advice - it really helps. 

Hx

[Tboag in reply to Hidden]

I am on hrt, that what the estesll is, I think you wok,d be fine for a weekend away, good luck 

[Nikkilhew76]

I've just had my second zoladex injection. I have had a few headaches and sore Boobs and lacy joints but my pain generally has been much better just the odd twinge here and there. I'm taking livial hrt, oil of evening primrose, cod liver oil. We are off to Rome tomorrow until Friday so have a weekend away it will do you the world of good. It's nice to have got rid of the constant nagging pain. I'm looking forward to being able to walk around although I have packed plenty of pain relief just in case!

[Tracey29]

Hi I had adenomyosis and endo stage 4 with total bowel infiltration-was in agony most days and v unhappy. I was put on zoladex for 3 months prior to hysterectomy which was hideous. Total laparoscopic hysterectomy with bowel resection and HRT the next morning has made me a different person. I feel great and although I knew I felt rotten most days before I didn't appreciate how rubbish I really did feel. I am so happy I went ahead with the surgery.good luck xx

[Tabathafb]

Hi

How did the Zoladex go? I'm in exactly the same position, main symptom heavy periods and lower back pain, sometimes pain in hips. Endometriosis has been lasered away recently but adenomyosis also looks likely.

I've been offered Zoladex with a view to hysterectomy if it improves the symptoms. And if it doesn't, I can't blame my uterus for the back pain..but the side effects of Zoladex are very off putting!!