zoladex after hysterectomy has anyone else had this way around?

[Alicepirate]

I had hysterectomy a year ago including ovaries removed but still have original issues long story but now offered zoladex to totally rule out endo was told none seen at hysterectomy a year ago , I have been told to expect side effects even though I in menopause but does anyone have any experience of this?

[CJR99]

Hi there,

Firstly, so sorry to hear you are still experiencing pain...me also!I had my op around the same time as yourself, June 2017. They found several large cysts (one ovary with nasties in it), fibroids and endometreosis.

May pain returned about 4-5 months ago and I am currently awaiting a second MRI scan to ascertain the problems.

There has been talk of Lupron and Zoladex. They often put you on these drugs to see if the pain improves, as sometimes people respond well to those drugs with pelvic pain and suspected endometreosis. I've specifically pleaded with my consultant not to go down that route, surgical menopause is tough enough!!I'd rather be stuck in a lift with Donald Trump to be honest!!However, rest assured everyone is different.

You deserve better treatment. Ask for an pelvic MRI scan. This will allow them to see deep into tissues and assess if there are any issues. You deserve to be given better treatment especially after everything you've been through.

I'm not sure if I've been much help but, please do get in touch if I can help further.

Best wishes,Clare x

[Alicepirate in reply to CJR99]

I think I gonna have to go the Donald Trump route I had MRI 2017 showing no endo ?? private gyne has said that new MRI wouldnt show endo probably and it is really expensive I had hysterectomy last year and at same time all endo was meant to be cleaned out they said there was none seen...... I had superficial endo removed from few areas including rectum and bowel during lap 2016. Over the last few years I have been offered zoladex maybe 7-8 times and refused I never had period issues really just bowel and bladder ones but was told they caused by adenomyosis and post ablation syndrome (but they werent I didnt have either ) but zoladex is the only lead I have at the moment NHS gyne have signed me off last Dec saying its nerve issue , pain clinic saying its not a nerve issues now and to get re refered back to hospital but that is going to take months as I'm not urgent referral as have no gyne bits left .

So I think I just going to have to try I am self employed and just cant wait or afford alot of private appointments my NHS gastro appointment has been moved to Dec I will have waited 17 months for an appointment by then but because I am already under NHS gastro and they know about my weight loss , blood in stools and pain I cant get an urgent appointment unless I have a new symptom, I have had stool tests recently that have come back clear so thinking issue on outside of bowel. I don't want to be opened up again so think I going to have to try.

My NHS GP is doing zoladex injections for 3 months.

Pretty scared of bone impact though

I will let you know how bad the Trump / zoladex route is first injection next Friday.

I have written endless letters to get treated better to PALS , ICAS but its a total mess at the hospital they just saying nerve pain but its not that I just need to get better asap I am desperate

Sorry to hear you still in pain too its so hard isn't it all the waiting and not knowing .

Thankyou for your answer it is helpful

[CJR99 in reply to Alicepirate]

My heart goes out to you it really does xx

I totally sympathise I’m self employed also...I had a very good job prior to that but,had to leave due to health issues.

I know the mri doesn’t necessarily show endo but,my consultant in Newcastle says it’s the gold standard with regards pain after hysterectomy.The crap thing is every region is different and as we know it’s all down to budgets!I actually went private but,having to have a second mri as consultant wants to examine tissues/blood flow etc with contrast dye...he’s alluded to neuralgia also but,as endo is estrogen fed is there not a chance a year on we’ve both had a return?I chose not to take HRT but,consultant explained certain foods often generate estrogen and that’s enough!

Can you beg your gp to refer you back to gynae?I know it’s really tough especially when we’re not classed as urgent (I’m only making a little progress due to cancer cells previously in ovary)due to no more lady bits.

It just seems awful that you have to suffer.It may be worth giving the zoladex a chance given the amount of pain you’re in. I shall pray that Donald is kind to you as you so deserve...

Please do let me know how you get on.

Best wishes Clare xx

[Alicepirate in reply to CJR99]

tee hee just imagining Trump in a gyne conversation is making me feel a bit sick

I took HRT for like 2 months I dont think I had horrendous endo either before hysterectomy but know that even a small amount can be painful and sometimes a large amount isnt even felt . I have been eating flax seed for the omega oils and I eat tofa and soya for the calcium so know they can be oestrogen generators and I've been drinking red clover tea. Did those things because of the osteopenia and me not taking HRT when the Drs keep telling me take HRT or the horrible calcium tablets they prescribe too but really thought I'd go the herbal gentle route but maybe thats making stuff worse, but not worse than HRT surely??

I have zoladex injection next Friday think I going to have to, to rule out endo. Else think when I do get NHS gyne that's what they will recommend first anyway as the gyne I saw privately works at my local hospital to.

I have a referral from GP to gyne but know that pain isn't an urgent referral reason unfortunately, I have a GP referral to colorectal surgeon too which was recommended by the private gyne as its mostly bowel pain I have and when she examined me that's where pain is . But 2 times I've been referred to the colorectal NHS team its been vetoed by NHS gastro as I'm under them already. But GP says gastro wouldnt deal with bowel adhesions endo anyway but I may have to wait to see gastro in Dec to be referred to colorectal. I which case I will have to go private again after zoladex as cant wait til Dec .

Hope you get your MRI soon and that shine some light on something its hard when we have no diagnosis really, chronic issues are so difficult makes you want to just hide away until better. Friend and family you can see have had enough of hearing about it all I know I have But just gotta keep on keeping on

hope you have a peaceful or exciting weekend

[CJR99 in reply to Alicepirate]

Thanks so much and you too!

Take care Clare x

[HellyLlewelly in reply to Alicepirate]

And sorry to hijack into your conversation.. .can Lipton or Zoladex treat Endometriosis post hysterectomy oophorectomy? I know little about these and was never offered them prior to hysterectomy. I also had

Adenomyosis and a rare cell proliferation ( rapid overgrowth) called Wolfian Duct Remnants detected in my uterus so I was quite the find in there!

The bowel was well adhered to my pelvic wall.

I'm tired, sore, weighty and at 15 weeks post op thought I would have been up exercising comfortably etc.

Nope. Feeling sad.

I'm hormonally ok on my patch HRT which is combined to control the endo regrowth apparently as progesterone in it.

Do you also know of any progesterone promoting or supporting foods.

Of course I love all the oestrogen fuelling ones, typically 🤐

Thank you.

Helly.

[HellyLlewelly in reply to Alicepirate]

Sorry to hear you are going through this. I'm only around 15 weeks post hysterectomy bilateral selling oophorectomy and I'm feeling a bit SAD and depression is creeping in as I fear I still have endometriosis. I was stage 4 and had a deep bowel shave and he couldn't promise he got it all for fear of puncturing me. The whole Op took 2 hours and it was longer than they expected. My bowel and 1 ovary were pinned down to pelvic wall so I guess he saw the most endometriosis there although he need not worry about the ovaries health as they were taken. I'm getting pain in my hips pain in my sit bones (the deep bones within the buttocks)

Coxics area and generally feel if I move too much or too too much in a day very abdominally sore.

I am confused as to whether this is still healing pain or whether my symptoms are still here as most of my back and prlvice pain before the op seems to be still hanging around.

I've only learned that the pouch of Douglas is infront of the rectum behind the uterus so it's logical pain in the Sacroiliac ligaments, sit bones and coxics area etc could be left over endometriosis considering my bowel was shaved free of it.

This week has hit me really hard I feel like I'm going backwards buying size 16-18 tops and I'm usually active, sporty (I wasn't in my pre op later stage pain) so the stalling ferling is killing my self esteem.

X.

Helly.

[Alicepirate in reply to HellyLlewelly]

Really sorry to hear that you are still in so much pain I would give it a bit more time you sound like you had a good gyne who's taken out a lot of endo during op . I saw a pelvic physio which helped me understand pain and where it was coming from may be helpful for you maybe. Also maybe you have adhesions after extensive surgery I had been looking at stuff about gentle exercises to help with these.

My background is

Had a lap in 2017 which showed and the gyne removed superficial endo in a few places including rectum, and utreosacrial ligaments also told I had adenomyosis then had a endometrial ablation agony after that. Told I had post ablation syndrome to then told only cure hysterectomy . Had hysterectomy then told no post ablation syndrome found no adenomyosis and no endo either seen. Pain slowly increasing since hysterectomy and bowel and bladder issue which were original problem also getting worse.

Saw private gyne who recommended zoladex desperate s have tried it had first injection today even though I've been in menopause for a year side effects are strong having like double strength hot flushes , so itchy , hard to wee, stomach very swollen and painful tingly hands and feet plus all the classic menopause things that I already had. Hoping side effects will calm down soon. Maybe an option for you zoladex though I suppose if you think some endo left.

Are you still under a gyne did you get a follow up appointment after hysterectomy?

[HellyLlewelly in reply to Alicepirate]

Alice do you understand why Zoladex would be used on You, when I read up on it, it sais its used to shrink the eddometrium of the womb to reduce bleeding and suppress ovulation? Is it used to shrink endometrial tissue if they believe endometriosis is still present?

I have looked at my diary my period is due (obviously I'm wombless now after htsterectomy) 15th so I'm at the time when my period would have been due. I have uterine crampy feelings, have had spasms for a week, I have back pain and feel terribly blue.

I live in Northern Ireland. Our NHS service has entirely collapsed. I will not get to see a gynaecologist unless I pay to see one privately. Seeing a Dr is pointless, they don't know about endometriosis or treatments so will refer me and the referrals process is at 18 months.

I suppose I could pay more to see my surgeon again (I went private for my surgery.) I'm just very concerned about my pain and feel lost.

My surgeon was able to tell me that the endometriosis was found on my ovary plus bowel was shaved. I don't know if during a hysterectomy they look at uterosacral ligaments pouch of Douglas and rectum for endo too? He is the best surgeon here and specialises in Endometriosis removal though his follow up appointment he was sick eith a cold and I felt the pathology report he read me did not reflect what he actually told me post surgery. It felt like he was reading about a different person so I was thrown and possibly didn't ask the right qn's funny he was so sick I was concerned for him as he spoke through a tissue with a red nose and streaming eyes.

This pain just has me very paranoid I suppose.

Though I suppose I could pay to see him again.

I can't help feeling my cramping is the endometrial cells thst ate there protesting as my period would be due and I'm on hrt oestrogen and progesterone comvined.

Regards

Helly

X.

[Alicepirate in reply to HellyLlewelly]

Zoladex is being used to rule out left behind after hysterectomy although no endo was seen during hysterectomy a year ago so really not thinking it will make any difference but will see. No gastro appointment until December so have to try something.

Maybe it is something they could try on you I suppose ?

MAybe you could write your surgeon a letter maybe with clear questions you want to ask, might be easier than an appointment and remembering stuff? Maybe ask about zoladex I am having mine after private consultation then I am having zoladex on NHS by GP instructed by private gyne, if you see what I mean?

DO you think your HRT correct do you need progesterone with no womb and is the oestrogen levels ok have you had blood tests 3 months in to test, can be done by GP again. You've probably done all this anyway but just some ideas Go with your gut instinct don't worry you're being paranoid at all you know best and if something's not explained properly ask again, it's hard when we don't look ill but feel awful 💗💗💗💗

[HellyLlewelly in reply to Alicepirate]

Thanks Alice for your support and encouragement I will have everything checked again in July to be sure I am ok ok this get level etc.

The progesterone is supposed to be like the Zoladex and stunts the growth of Oestrogen (so the Endometriosis surgeon consultant said) he recommended I am on combined Hrt 1 year post surgery before the switch to Oestrogen only.

I maybe will write to him about his findings and why I feel pathology and his findings post op don't match up ie he said on MRI Adenomyosis plus on inspection yet pathology didn't state Adenomyosis but a rare cell proliferation Wofian Duct Remnants left over continuing to multiply.

I am the kind of person who needs the black and white to accurately relay my history etc.

How is your condition is gastro appt to rule out anything undiscovered?

Do you suffer back pain or pelvic pain?

I know now that most on this site seem to mention a lack of endometriosis being found even in diagnostic scans and lap's and I believe symptoms are key to diagnosing it. I've had incredibly bad gynae issues since 2001, this is when I'd say my life started to suffer and I became a slave to my menses and believe it was

Always endometriosis as sex was painful and my cervix being touched made me leap!!!!

It's just been a long road...maybe I'm afraid of being well....Im very much traumatised over my life with this.

Thank you so much.

H.

X

[Alicepirate in reply to HellyLlewelly]

You sound like you are really taking control of your health and asking plenty of questions do keep on. I don't think you are afraid of being well you just have lost trust a bit in the health service it's fine to ask lots of stuff will hopefully get us to a point of wellness rather than just trying to manage. Keep on

My main problem is pelvic pain most days it's difficult to walk and it gets worse slowly . I taking tramadol and dihydracodine daily now not together but through the day , most pain relief I've ever been on . after a bowel movement I find it hard to stand up with the pain and opening bowels 3-10 times a day have tried all types of diets fodmap etc but no relief gluten seems to make it worse coffee and apples. Bladder also very painful. I have had endo removed but made no difference with my pain levels pain have just slowly got worse. All around bowel, I finally have managed to get a colorectal appointment in July I was meant to have this before hysterectomy as gyne though it may be a bowel issue to ad didn't want to do hysterectomy until I'd seen colorectal surgeon. Then that gyne left next gyne cancelled colorectal referral and assured me nothing wrong with bowel gyne stuff causing bowel issue .......

anyway I'm a good example of how you've gotta stick to your gut instinct and ask plenty of questions as I have ended up in a rubbish situation from trusting and feeling like I shouldn't question all the time ...... we must

That's really interesting about the progesterone I will look into that thankyou, I have managed to get colorectal appointment at a hospital with a bsge center it's an hour away but happy to go there appointment is I July lovely appointment lady took pity on me I think as hospital around here we're 18 week wait s 🤕

[HellyLlewelly in reply to Alicepirate]

You are an example of medical professionals not letting someone follow their gut on their own body and symptoms, I really feel for you, the situation you are in really isn't fair and amounts of painkiller are not ling term sustainable I'm sure nor desirable to you! I've heard that even small amounts of endometriosis can cause havoc, yet its so difficult to spot on scans etc.

There really isn't a more desirable outcome for you is there, as endometriosis if it still is inhabiting you, can grow back and bowel issues are bowel issues thats a whole new diagnosis ranging in severity I suppose.

It's a pity 1 type of injection cannot kill left over and I mean kill it eradicate and obliterate endometrial cells for women like us who are wombless and in no need of.

Are you happy you no longer have your cycle? I'm delighted I suppose but due to pain and heaviness/ cramp still, I'm not fully celebrating yet. It takes time and I have to wait this out.

Alice the more I think about it, had you your surgery/treatment the other way around I bet you would still have bowel issues ongoing and possibly a combination of the two issues ongoing...

I know you like myself wouldn't have taken the hysterectomy decision lightly. I couldn't go through my monthlies anymore due to pain severity and bed ridden time etc as I couldn't look after my child properly.

I honestly think we have to accept we got the treatment we did and that (as I'm sure you were told like me it wasn't 100% we wd be well afterwards) our treatments came in time before a higher level of severity hit us. I'm paying a loan back monthly due to mine, I was told 9 month waiting list yet when I phoned up I was told I had another 12 months plus at least to wait (Northern Ireland is a joke our NHS has crumbled much worse than the rest of the UK.) Which kind of left me suicidal to be honest at the prospects.

I'm still not convinced that I don't suffer from mild IBS yet pray its just side effects of my bowel still settling post Op.

Since my hysterectomy bso and bowel shave I'm about 15 weeks post op, my bowel is acting differently in the processing of food and medications. I'm becomming really constipated which was never me, on both Ibuprofen and codein.

Literally 1 x Co codemol 8/500mg has me constipated when I used to take up to several of the 15/500mg tablets daily without rabbit pellet effects on my bowel the next day.

Coffee is a stimulant that way so helps me go.

I don't believe that any particular diet would stop endometrial tissue growing surely? I'm maybe ignorant to that information currently. I take multivitamins and pro biotic but have a mixed varied diet.

There are so many more things I want to educate myself on regarding these conditions.

I just often wonder why us women have these bloody conditions, my pathology had the Wolfian Duct Remnant cell growth showing (proliferation) a leftover process from embryogenesis, so that was before I was even fully developed so I had no part in fuelling this! It was in my genetics.

Women are screwed in this life every which way, if these conditions affected men's testicles we would have had cures 30 years ago!

X.

Helly.

[Alicepirate in reply to HellyLlewelly]

Yes it definitely changes bowel the hysterectomy but slowly slowly does wake up just prunes and apricot I find good like proper middle aged women 🤣 And magnesium good I buy my vits off wild nutrition site they really good I have a 25% voucher code if you want anything but I'm not trying to sell stuff too you😂 Lots of other good site good info on there to anyway 😃

I've never really had issue with my period they always were heavy but that was ok had a couple of very heavy ones after the lap but think they would have settled. I really miss my periods really weird as it sounds found them cleansing a bit never been to the GP ever about periods , my issues started 3 years ago with pain and were always bowel issues and sometimes bladder ones that I was told was my swollen womb pushing on my bowel but that wasn't the case as no change in symptoms. Also once the hysterectomy had healed up no improvement and pain getting steadily worse.

I ve had sigmoidoscopy since hysterectomy but I referred by rheumatologist and never saw a gastro afterward as constantly delayed gastro appointment now appointment is in dec??? which showed nothing so gastro just say it's a 'tricky case of ibs' and say I am fully assessed but I haven't ever been examined by a gastro and GP said sigmoidoscopy wouldn't have looked at where my pain is as it is higher up in the bowel. There is a spot where most of the pain comes from for the last 3 years.

No I don't think diet totally can work I think if you eat healthier will help and eat more real foods not processed stuff gonna help but don't feel you can be 'cured' I happy to try stuff but have lost so much weight now don't wanna cut out anything else.

So what do you have to do now with your condition will you get any regrowth?

[Alicepirate in reply to Alicepirate]

I take dihydracodine it doesn't make me constipated or sleepy it doesn't have codine in it is a different drug or it comes as co dydramol which is already combined with paracetamol. It is really addictive but I am really careful but it does work well I take 2 paracetamol then 30 mg dihydracodine then another half if that not enough but normally it was until recently 2 dihydracodine would do me for the day. Doesn't make me constipated either . They hesitant to give people dihydracodine for some reason, if i took 8 a day which is full daily allowance would be a worry but I just really careful and they work really well and I not sluggish. Else tramadol I take I have the tablets that dissolve in your mouth as I veggy and don't take capsules , I take them in tiny bits and they work ok too and don't zone me out or make me constipated you probably know all about pain killers anyway but just in case they not giving you a good choice 💗💗💗💗