my hospital appointment

[winey]

Well i had my hospital appointment with a specialist consultant today. I'm impressed. For the 1st time i feel Ive got answers. Yes my back pain is connected to the endo. and i have been put on a 3 month course of zoladex. So im very nervous about having a mini menopause but im having night sweats and hot flushes anyway so im hoping it wont be too bad. Ive also been told i can have a hysterectomy as i cant have any more children. so for me it was a brilliant outcome. however any advice on the zoladex and hysterectomy is appreciated. hope all u ladies are feeling OK today. xxxx

[dawny1977]

Hi there. I too am on Zoladex along with Hrt...have been now for about a year...it has definatly been a blessing for me as it has helped with my mood swings for first time...

I dont feel like i am having a mini menapause. Are you taking Hrt along with Zoladex?

[Catcat]

Hi I had a full abdominal hysterectomy 9 weeks ago plus both ovaries removed because they had fallen apart , I have to say so far it's the best thing I've ever done, no pain !!!!! Only from surgery but that has settled now x good luck

[loobylou74]

Hi ,Great news you feel positive it makes a huge difference wen someone listens doesn't it.

I'm sure you know this as its been discussed a lot on here already but hysterectomy does not cure endo but it will help for a few years at least .I had 4 pain free years after mine before it grew back to a point where i was in pain again.I just wished i'd of known it was still going to come back because no one ever told me it was possible so i was devastated.

I'm on prostap now which is same as zoladex and it has helped so i really hope it helps you too.good luck with everything.xxx

[squidgy]

So happy to hear you have had a successful meeting with the consultant and now have some answers and beginning a course of medication to try help alleviate it. Hope it all goes well with you. Lovely to hear about a consultant who has listened. x

[pinkpig2009]

Hi there

I had a total abdominal hysterectomy and removal of ovaries & fallopian tubes 10 weeks ago and it is the best thing I have ever done.

I come round from the surgery and yes was in surgical pain but I also noticed that my endo pain was gone. I was off all painkillers less than a week after my op.

Good luck and best wishes for the future.

[winey]

Hello ladies thank you for all your support. loobylou, i have read loads that the endo does come back even after a hysterectomy, i'm with the worlds leading specialist in endo where i live and im pinning all hopes the her dye will show all endo and it gets removed. fingers crossed :). although 4 yrs sounds great with no pain. how ever it is sad that urs is back and i hope that ur docs will sort it out for you.

Dawny1977, no my consultant is not putting me on the hrt as she wants all hormones to stop as it is the hormones that increase the endo. however if i have the hysterectomy then yes i will be put on hrt. xxx

[worth71]

I'm on the waiting list for full hysterectomy, they couldn't remove any endo at my lap as too extensive. Mine has to be done as open surgery too, which only worries me as I'm still overweight and have a flabby belly lol, but am worried about the scar not healing, is the cut in the same place as a c section cut would be?

Can endo grow back if ovaries are removed? I'm still really confused about it all, but doesn't ovaries produce oestrogen which causes endo to grow, if they are removed will that stop it?

Would love to hear if you've had ovaries removed, your ages and if you've managed with the menopause symptoms or gone onto hrt?

Some of your hysterectomy stories are very encouraging.

Many thanks xx

[winey]

Hello, ive not had it yet. lol. But the hope is that if its all removed then endo wont gow back in the womb. however if they dont cut it all out then yes it does grow back. I havent had any info from doctors, ive spent weeks researching it all myself.

Im 31, ive got 3 children and ive been sterilised, so my consultant has said i can have a hysterectomy as im not in need of my reproductive system any more.

Im waiting on my doctors to give me the zoladex injection which will be nxt week so not sure of the menopausal effects however i am already having night sweats and hot flushes anyway. lol.

xxx

[Amb43]

Hi again winey, how wonderful it is to finally be listened to. Glad you are pleased with the outcome. We have spoken before about the back pain, did the consultant explain how the back pain is related to the Endo? Is there anything that can be done? Does he expect the hysterectomy to rid you of this pain? I am still in the same situation with my back pain, in fact it is getting worse, however, I have now had a "normal" lumbar spine x-ray and yesterday a physiotherapist confirmed there is nothing structurally or musculoskeletal wrong with my back and in fact he was impressed by my range of movement. I was topped right up with morphine though or I wouldn't have even got there. So, double confirmation about this, so, am ready for my post lap appointment next week where I have GOT to get to the bottom of this back pain. I have read about yourself and so many other ladies with lower back pain, but yet to read (until now) that it is confirmed as related to the Endo. So very pleased for you and any info you could give me would be fantastic, this pain is now beginning to drive me crazy, and getting rather depressed. Hugs to you xxxx

[Juleyanne]

Hello ladies, I have been through the Zoladex injections = synthetic hrt Tibolone. Apparently it works for endo but if adhesions are your problem, then it probably won't work. It didn't work for me as I have had widespread endo for years and scar tissue (adhesions) were also widespread.

It starves the food of endo, oestrogen by putting you into pseudo temporary menopause. Any existing endo won't magically go but at least it stops it spreading! These days they seem to be using it to treat younger sufferers recently diagnosed with endo. Up until recently endo has taken 7 to 10 years to be diagnosed! This often resulted in endo left to spread to different organs and parts of pelvis, stomach etc. I am in my early fifties now, menopausal so apparently as I now have no periods, oestrogen in theory should not fluctuate so wildly and any endo deposits that might have been left after previous surgeries, should not proliferate. It's been a wait and see with me.

I still get alot of pain, low back, hip and pinching right sided which makes me feel sick at times

and goes down my right leg. I get a whole host of bowel problems made worse by codeine pain killers which constipate badly, so have to take stool softeners and even laxatives sometimes. Then

I'll get the exact opporsite! Urinary frequency especially at night and pain means poor sleep. Sitting and eating causes nerve like pinching in my groin, it's not pleasant! I have no tubes they were previously removed but presume I still have sorry to be gross, shrivelling ovaries. It might be the deep right pinching pain is again down to adhesions glueing organs together ie ovary to bowel.

This happened before fallopian tube stump stuck to bowel and ovary to bowel the other and scar tissue was found in my stomach too. If things are pulled or twisted by scar tissue then nerves can be stretched too and that hurts! I am still deciding whether I should consider hysterectomy but like others am aware of major surgery causing further adhesions which is a big worry! It's good to hear post hysterectomy women kindly reporting it has worked for them. I guess time will tell if statistics long term are positive for the majority having this op, fingers crossed and exchanging info is so helpful.

[worth71 in reply to Juleyanne]

juleyanne....so many of your symptoms are similar to mine, the pain areas, the bowel behaviour etc. I'm currently on the waiting list for a full hysterectomy, im 41, i'm still not 100% sure about the hyster but i have to attend endo clinics every month in the meantime so i can get more info before i decide. i have struggled so much with lack of sleep for a long time, and especially since my lap a few weeks back, i have finaly given in and am trying amitripline, and took my first one last night, i went about 6 hours without getting out, i was still disturbed sleep but not enough to make me get out, i dreamt lots too, but i shall be taking them a bit more from now on, getting some decent sleep makes all the difference xx

[winey]

Hello AMb43. I thought i reconised the name. lol. :). Yes the consultant said that it could be the other organs stuck together. as my bowel and womb were stuck together found in lap 2 yrs ago. she said back leg hip pain was par for the course with endo. ive not had any scans but she is and endo specialist and hears this daily. she is hoping that with hysterectomy it will stop all womb pain.and as i cant have more kids there is no point keeping it as i have no use for it now. i think thats why i was offered it straight away. not sure what will happen with my back but assume that when they do hysterectomy they will also get rid of whats in my back. i will need other specialists in the operating room when this happens.

My advice to u is to research the spealists in ur area, tell ur doc that endo is back, so when u get an appointment u can then discuss ur back. Thats how i got it. however my endo is back in the womb, so i wasnt lying but i had other agendas in my head.

I so it helps and they sort it for u it is really depressing. Good luck, please keep me posted on ur progress and sending hugs ur way. xxx