A lady definately posted on here once about the injection after hysterectomy and had anyone else had it in this order? Zoladex I believe?
I am 8 months post bso total hysterectomy no cervix etc, Im convinved my endometriosis is back on my bowel and possibly my bladder.
After feeling quite symptom free for 3 months post Op, for 4 months, its crept back in, even pain on sneezing now catching my incision sites or possible endometriosis adhesions/cells ( C section scar...)
Frequent urination has hit me like a bolt in the last week, waking up painful bladder, needing to wee, some pain on passing No.2 and quick urges to go here too with that gurgling dropping through my system pain too.)
Its all symptoms I had pre hysterectomy plus the really bad flank/back pain hasn't left which has me debilitated!
The back pain came to a peak and sure enough when I looked at my calendar it was when my menses would be due on!
Ive also felt the gost ovulation tinges when that wd be due too...my ovaries were completely entangled in endometriosis and oinned to my pelvic wall.
I will try anything now to catch this
F$cker.
If my hrt both hormones are somehow still feeding my endometriosis cells from a cellular level (surgeon coukd perforate my bowel so obviously he said every cell cant be removed) to growing new patches/ adhesions, I want to suggest this type of injection to my GP. (Zoladex?)
Or prostrap (are they the same type of injection? To stop this M@ther F $cker staking claim on my life again.
I cant do this anymore.
I actually woke up wanting to call the Samaritans today.
Helly.
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HellyLlewelly
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Hi, really sorry to hear what you've been through I just wanted to say that taking HRT (if I understood your post correctly) can unfortunately stimulate the growth of endo even post-bso for some people. You could try different types of HRT- e.g. I heard Tibolone is best for endo (but I'm no doctor!). Just make sure you aren't taking unopposed oestrogen!
The other option is, if you are noticing a cycle to your pain (which shouldn’t be happening without ovaries) it could mean you have an ovarian remnant that is still producing a hormonal cycle- aka they didn’t manage to get all of the ovary out during your op- perhaps more likely if it was all tangled up. This would definitely be worth discussing with a doctor.
Taking GnRH-a drugs (Zoladex etc) just puts you into a temporary menopause, but since you’ve already had your ovaries removed (assuming there isn’t any remnant tissue remaining) you could just stop taking HRT to achieve the same effect without adding in more synthetic hormones, so I don’t think GnRH-as are your best bet personally. That said, obviously I’m not a doctor so best discuss this with them. Hope you manage to get some help!
Might have read you previously discuss that theory of a left behind ovary part on another post. Its possible. I spoke about my cyclical isdues last month too on this site, theres defginstely a pattern since about month 4 of my hysterectomy.
Nothing is impossible with this monster condition.
Im on both hormones via Evorel Conti patches and the progesterone portion is supposed to keep endo regrowth at bay.
My GP is clueless and my specialist Im referred back to is an 18 month to two year wait, unfortunately short of paying to see him at £200 a pop at his private clinic, Im relying on other sufferers for info.
Im really indebted to the ladies on this site so thank you -
Northern Ireland is the part of the UK currently most affected by the NHS crisis and our waiting times are the worst in the UK. We have less specialists per head population and just as many issues as the rest of the UK like over population (Im im no way making any digs at refugees 😉)
........
You could call us a village as apposed to the rest of the UK being big Cities as most of our med students train on the mainland and due to better wages etc/living conditions they dont tend to come home to practice their speciality unfortunately. Were a bit of a developing country in terms of medical community here... We are the worst paying also in the UK in specialist medicine apparently, great reasons for the top guys to live here eh!
I thought because the endometrial cells start out following a cycle (as they come from the womb and are reactive to hormones monthly and shed away) that they are reacting to my hrt and still following a cycle.
I know I cant get "more" new endometrial cells as I lack a womb and cervix ie no period no backwash yet, do these cells grow from a cellular level and multiply vastly due to estrogen?
I would love women to come forward and discuss their knowledge of this.
My specialist is the top man for Endometriosis in Northern Ireland, probably the obly one to be fair. He said he shaved it off my bowel to the pount wjere he couldnt go further for fear of perforating me. So I guess hes very thorough but made no eccuses that he knows it still exists in me on a cellular level.
This grey are is haunting me, has it grown back in 8 months? How much? How? Eating my hrt estrogen? Feasting on it..Im in absolute agony every day. If I hoover Im in bed by afternoon and for two days after!
Ive no idea what type of estrogen Evorel Conti patch I think its one of the main patches prescribed uk wide both combined and singular hormones.
My GP is a lovely guy but hes a general practitioner and hasnt as much as thought that my pain could be reoccuring endo.
Im afraid to bring it up for fear of looking like a nut case.....
Good news is my referral for hysterectomy from NHS June 2017 is at the preview stage and Im asking my GP to refer me back to my Gynae Surgeon to get the hysterectomy (too late I paid 🤕) swapped for a laparoscopic investigation.
Im on the ball that way and I will press on this until its done, Im bloody owed that much. It really was my GP's failure to investigate me that saw me have this pain condition for years without knowing. I had surgery in 2005 and they called it womb erosion ie fecking medical name ectropian ie Endometriosis yet never ever said endometriosis on my file. Same thing happened chocolate cyst in 2012....again I was failed to be told it was endometriosis.
Never once did they say you habe two conditions in the past relating to endometriosis we could give you an investigatory laparoscopy to see how thats progressed.
Nope.
Im so peeved about the whole thing, you can tell.
Oh amd were supposed to eat like fecking rabbits too now to cull this biatch.....yes, its a great prognosis!
Wow, 2 years for a specialist? That's insane- I thought 9 months was bad! Really sucks. Just to reply to a few things: endo can produce its own oestrogen, which is why it's so important to excise it at the same time as having something like a bso- otherwise it can continue to cause pain in some women. That said, HRT can also feed it in some people. If I were you, I might be tempted to go off HRT for a while to see if it helps your pain- then you'd know if the HRT was contributing. That said, obviously you'd then have surgical menopause symptoms which can be brutal, and can have serious health consequences if you stayed off it long-term, so it's a toss up really and a doctor should be advising you, even if they are a bit useless (can you change GPs?).
Another thing- a hysterectomy usually has very little impact on endometriosis, since retrograde menstruation is not necessarily the cause. In fact, they have found it in foetuses and young girls who have not yet had periods, so it must have been caused by something else. However, if you have adenomyosis, a hysterectomy would help- although it's my understanding that adenomyosis usually (but not always) calms down after menopause too.
I have heard about the lack of specialists in NI- do any of them do excision? If I were you again I’d try and find a surgeon that can perform excision of any remaining endo before you think about hysterectomy. Good luck!
Thanks Sarah you make really good points re endometriosis and its growth which Im like a sponge for information on.
In March I had been bed ridden since January and as a family we decided to pay for my hysterectomy. My wait of 9 months had a further 19 months estimate on an NHS surgery date.
Our crisis has us at Trauma and Cancer surgeries only, no routine Op's.
This is the sad part about it all as I felt a return of cyclical symptoms and pre surgery symptoms from as little as 4 months post surgery. My surgeon removed it all to a degree where he made the disclosure not "every" cell can be excised for fear of perforating your bowel. I was on the table for 3 hours and he worked extensively on the excision and was very affible, very much understood our families sacrifice to pay for him to do the removal of (adenomyosis womb) plus endometriosis etc. 6k it cost us back in March.
We live in an NHS blackspot unfortunately.
Good news is Im in the process of getting my slot on waiting list which was for the nhs hysterectomy turned into a laparoscopy so by the time it is due maybe 9 months away if Dr Hunter finds Endometriosis inside me he will thankfully remove it!
Lady on here had Zoladex post hysterectomy so its possibly an option to do it this way around I believe.
Since my bowel was shaved of endo in March I have terrible side effecrs still like horrendous gas on relaxing and urgency of stool, Loose stool after constipated (varying textures in close proxomity)
Going up to 4 times before lunch.
The WAITING on my specialiat is the Pits.
I know privately its £195 to see him
And after the 6k, we dont have it.
I believe he guests speaks at a local Endometriosis support group so miggt gave to "stalk" it/him there.
Ive made an application to join the group.
He truly was a very affible man and I don't doubt he shaved ne to the last cell ge could without doing me damage.
Endo seems like a b@sdard, an unwanted guest that keeps knocking on your door.
He was able to tel me that Adenomyosis can be pre baby pre period etc, I remember him looking at my MRI scan under the light (this was under him on the NHS) pointing out my boggy bits and enlarged womb saying its likely Id suffered this many years prior to my difficult labour in 2014.
On removing my womb he said it was "spent" and told the surgical nurse he was glad to have unburdened me of it 🤒...
Pathology showed I had another cell proliferation condition the rare
"Wolfian Duct Remnant " condition.
Im glad its out. Growth growth growth of all types of cells, inside and outside of it. I sound like I was truly a mess.
Aw no worries- I really hope the specialist can help when you finally get to see him. If he can go in again to get rid of any remaining endo/check up on possible ovarian remnants, maybe that's the best thing. In the mean time, you could try making diet changes that some people find really helpful for pain and bowel symptoms? And yoga etc. It also might be worth thinking about pelvic floor physiotherapy specifically for endo- there can be multiple pain generators with pelvic pain, and if you've had it for years it's fairly likely that you have pelvic floor dysfunction. I've spoken to many women who swear by it. But... money is of course the issue again Either way, hope something works out. This site is a great place to vent in the mean time!
Thanks Sarah I am currently with a womans pelvic physio, she is very good and I have ecercises to do daily (as much as possible) I had 2 weeks previous to this week of feeling marginally better, putting that down to the exercises but Ive had a "flare up" of symptoms since two Fridays past, just my luck as we headed on a date bight to the cinema (2 swift bacardi and diet Sprite in me with pain relief took the edge off. )
I believe Im more stiff without these exercises which mainly rotate/stretch my glute and flank areas.
Ive started the Fodmap diet. I bought my Saturday grocery shop in based around its principles. Im having trouble standing so short meal times are ideal for me. Never thought Id be a brown rice microwave pack girl, never, cooked everything from scratch!
I had my first surgery in 2005 and feel almost 15 years on maybe I should be feeling lucky it only reached stage 4 this year. I know there are women throwing up with the pain of this condition.
I had an ingenious plan (sorry if im repeating myself) my NHS wait list hysterectomy from June 17 is still in the system so asked my GP to re-refer me to my Gynae again so he can chamge the nature of the Op to investigatory lap plus excision if needed. I was glad I thought of it instead of telling them I had my hystetectomy private and no longer needed surgery. Ive already done 17 months waiting on this so why not switch it to laparoscopy!
Finding my days increasingly hard.
Had to jump onto Fluoxetine anti depressant.
40 is looming over me in January and never thought Id still be so debilitated
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I just wanted to say that taking HRT (if I understood your post correctly) can unfortunately stimulate the growth of endo even post-bso for some people. You could try different types of HRT- e.g. I heard Tibolone is best for endo (but I'm no doctor!). Just make sure you aren't taking unopposed oestrogen! 
Do I have endometriosis or just a cyst?
Zoladex for Endometriosis 
Finally having a hysterectomy 
Adenomyosis and referred pain
Ovary failing after sub total hysterectomy - help please(sorry it's a long post) 
