Consultant appointment on Friday! - Endometriosis UK

Endometriosis UK

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Consultant appointment on Friday!

Kb3rry profile image
3 Replies

I had been on Prostap injections that really worked for me for six months. When the course finished the pain gradually came back over a six/seven month period and is now an every day (varying degree of pain) occurance.

Now I am stuck on what to do. Do I go back on the Prostap again or do I push for a hysterectomy? I have read so much on endo since being diagnosed following a lap and thought that the hysterectomy option would take it away. Now I'm not sure. I'm hoping now that I have a different consultant that I get what I want....whatever that is!

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Kb3rry profile image
Kb3rry
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Chrissie66 profile image
Chrissie66

Hi Kb3rry

The thing with hysterectomy is that it is not a cure for endometriosis. You don't say how old you are, but chances are that you'd have to have HRT and the endometriosis is 99% certain to come back. They only have to leave the tiniest spot inside you; it could be invisible to them, but it will feed on the HRT and you will find yourself back in the same situation you are now.

Also, hysterectomy is major surgery with all of the inherent risks it brings in itself - I'm not even considering a hysterectomy for the reasons above, but even without that, my gynae has told me that there would be a huge risk of puncturing any of the other organs involved - which is pretty much all of them! - and I could end up with a whole new set of problems. On top of the endometriosis which would almost certainly grow back even more viciously given all of the extra scar tissue a hysterectomy would cause.

I've been on and off Prostap/Zoladex for 15 years or more now, I'm 46, so I've possibly got another 10 years of it but surgery is out for me, unless the situation ever becomes life threatening (I was diagnosed after a cyst twisted on its stalk and ruptured, it had to come out because of the risk of infection. Now I'm scanned every 6 months to make sure there are no cysts growing, and if there are, they're zapped with Zoladex before they get too big!).

At the end of the day, only you and your gynae can decide what's best for you, but if anybody tries to tell you with 100% certainty that hysterectomy will cure you of endometriosis, they're wrong. There ARE some very lucky ladies out there, but they're in the minority.

Good luck, and I hope your new consultant comes up with a plan that works for you :)

C x

Kb3rry profile image
Kb3rry

Thank you Chrissie66,

I really appreciate your response. I'm 37 just now, will be 38 in December. I have thought about this in the pas tbut having read a lot about it (as you do) you have just reinforced pretty much what i was thinking with me. I was quite happy with the Prostap, and although I hate that you've got endo I am glad to hear that I could go on this long term because, as I say it was ok for me.

I had wanted to go back on the Prostap but my boss at work had a hysterectomy and she has been saying it was great etc etc which really confused me. Reading what you have said I think I will probably opt for the Prostap again. Better the devil you know I suppose and take my chances with that.

Thank you for taking the time to feedback. :o) KarenXx

shrek profile image
shrek

Hi Karen,

i had a hysterectomy 10yrs ago at the age of 30. (although my ovaries were left in) my endo has returned over the last 12-18mths and i am now trying 2 find out the best course of action for me.

Hysterectomy doesn't solve endo, so in hinds sight, i don't know if i would have had such major surgery if i'd known i'd be in the same situation.

if you are able to continue with your treatment and it works, try and put the decision of a hysterectomy on the back burner till it becomes necessarry to reconsider!!! Best of luck. xx

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