According to Gynae, endo and bladder issues not related

Hi there

I have been reading a lot on these boards and the support is wonderful. I recently went to see a new gynae. This was at UCL Hospital's endometriosis clinic. They are renowned and have specialised experience in this condition. I was previously with a different hospital and had a lap - endo removed, except on the bladder.

I originally went to the doctor because I had bladder issues. I was getting stress incontinence despite the fact that I am a (now) 45 year old who has never had kids and there didn't seem to be a reason for the bladder problems. I was sent to a continence nurse. At the same time I started developing pain with bowel movements. This was diagnosed as IBS and I was given buscopan. The continence nurse was lovely, but couldn't work out what was wrong as the pelvic floor was ok and the bladder seemed to be working fine. She was the one who started noticing that the problems were running with my cycle. Long story short, I was finally diagnosed, referred and had the lap. I was then given a mirena coil and extra progesterone when the constant bleeding wouldn't stop.

The problems have been escalating again and I wasn't happy with the care I was getting from the previous gynae, so I asked for a new referral. The new guy is a specialist in endo, at the endo clinic and he is also a specialist in Urogynaecology, so I figured this is the right person for me to see.

So the new gynae says: "you have endometriosis, you have bladder problems, and you have legs. The three things are not related to each other." I said that the bladder problems go hand-in-hand with my cycle and the other pain and swelling and he said it could be hormonal, but doesn't have anything to do with the endo. And yet, I have endo on my bladder. They now want to arrange another lap, but first want to do 3 months of Zoladex injections. I am ABSOLUTELY TERRIFIED of this and don't want the injections to the point where I would rather suffer. They will not listen to this. I have a terrible situation at work and I am managing not to assault my boss by sheer will-power (ok, I know that sounds melodramatic, but it is very stressful). I don't think I will be able to hold things in check if I also have to deal with massive mood swings brought about by hormones. I can't afford to lose my job. I know health is more important than work, but I need to eat and pay rent.

So, I guess my questions are:

Does anyone else have similar bladder issues? I keep needing to go and then it doesn't seem to empty properly, or fills up again quickly. I get stress incontinence - but only around my period.

Have you been told it is not endo related - if so, what on earth can it be?

What do I do about the Zoladex issue?

And I am so upset about the fact that if it isn't endo related, does that mean the gp could have sorted the bladder issues out long ago and I didn't have to spend two years wearing tena pads? I am so down I just can't stop crying!

5 Replies

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  • Withpout know ing the full extent of your bladder problems its hard to say.All i can tell you is i am 35 and from before xmas last year i had bowel issues pain and kept going to the doctors with what i thought were water infections cos thats what the doc,out of hour and a&e said.It was a really bad pain in the middle of my body and like you i couldn,t seem to fully empty my bladder,went often didn,t pass much and sometimes leak.Anyway its a long story but the upshot of it is am having a hysterectomy 22nd nov due to endo ,its the third time its come back,and my surgeon has told me its in my bladder,following a cystocopy and the symptoms where down to that.I had to have 6 months of deceptyl injections which is simular to zolodex before he would operate to shrink the deposits and i also have a fibroid.Once on deceptyl the bladder symptoms have disappeared.Hope this helps.xxx

  • Thanks littlestar, that really does help. The bladder symptoms you describe are me exactly. The stabbing pain, the going a lot, the leaking, never feeling as though it has emptied properly. But not the whole month, only mid-month and period time. This is why I just can't understand the emphatic insistance from the gynae that it is not endo related, even though there is endo on the bladder!

  • Hi sadsmile

    i have had endo for some time now and the dos just keep trying to fob me of with the marina coil,ive had one lap when i was diagnosed had pollops on womb,been docs countless times complaining of frequent use on toilet before due on i get of the loo then have to go again.i have bad heavy pain in bottom of stomach, pain in thighs and pain during sex,so i went bck to docs and it was a locum who actually listened andr is sending me for a scan to see if its fybroids so just waiting for that,and as far as i know it could be on my bladder but they are saving money and not giving me another lap.its sad that they dont care.

  • Hi there! I have Endo and excess oestrogen hormone problems, varicose broad ligament causing all sorts of problems including bladder and bowel problems just like yours! My

    Gynae says they are all related with excess oestrogen being the main factor! I gave just had 3rd inj of zoladex - first month fine (increase in symptoms but that's normal) 2nd month increased symptoms and v emotional, down and soooo tired for about 2 weeks but since then I've been much better than prior to! Great in fact! dont under estimate the hormones! The injections did not hurt! (Unless I'm real hard?!) it doesn't suit everyone and I've had every other thing going but this has helped me! I'm 40 (just) with 4 children (2 small ones) and was on my knees suffering some days before! My pain is slightly improved but massive improvement of all other symptoms!! Don't be scared Hun, it could be brill for you?! Let me know how u get on! Lots of hugs Tracie x

  • Thanks so much, guys. I just don't understand the comment from the doc, who is a specialist in both endo and bladder. If so many women have the same thing, then surely it is not 'completely unrelated'. Oh heck, I don't trust any of them any more!

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