Endometriosis specialist

Hi ladies,

Had my follow up appointment today after my lap in February. The doctor gave me 2 options, 1 take prostap for a few months to put me in the menopause and if that worked, a hysterectomy would be the cure, or 2 see an endometriosis specialist that has started a clinic at my local hospital and go from there. I have chosen to see the specialist but don't know if I've made the right decision. Should I have tried the prostap and if it worked, had a hysterectomy, or is it a good idea to get the opinion of a proper endometriosis specialist? Husband thinks I have made the right choice, because at least I will get more detailed I do from the specialist. X x

20 Replies

  • Definitely made right choice endometriosis specialist can do excision surgery to remove the endometriosis then hormone treatment if necessary. Hysterectomy is not a cure for endometriosis. All the best xxx

  • You've made the right decision. You're lucky to have a gynae who offered you this option. A hysterectomy is absolutely no guarantee that endo will not return. There are many women on this forum reporting endo returning following hysterectomy. The only reason to remove the uterus is if it is diseased, prolapsed (maybe) or if you have adenomyosis. Moreover, Prostap is a very strong drug with potential side effects some of which might not be reversible. Some endo specialists also recommend this course of action so don't be surprised if you get the same answer. In this instance do your research. In my view, good, effective surgery is currently the best option coupled with dietary and lifestyle changes.

  • So well said Brownlow. I think holistic measures after a thorough excision could work far better than any medication. I am in the middle of a long post bringing together all the findings on it so that there is a point of reference that can be added to if others have suggestions.x

  • You've definitely made the right choice. As the other ladies have said a hysterectomy is not a cure for endometriosis. The specialist will be in a better place to run any more tests or scans that might be necessary, get the right team for any surgery needed and give you the best advice hopefully. But as Brownlow has said also do your own research. Whenever I go and see my consultant at the endo centre I go to I have a long list of questions and topics I want to discuss with him so start looking into things and writing things down so you don't forget to raise them

    All the best

  • Yep you've definitely made the right decision, I'm now seeing and endometriosis specialist after my first gynae cons really new nothing, I've had my first appointment and I'm now on zoladex for 3 months and have my next appointment at the beginning of sept where I will be listed for surgery if the zoladex has done what it's ment to x x

  • I totally agree with Browlow - definitely best to see the specialist - I have had zoladex and taken the pill back to back for over a decade and aged 42 and waiting for menopause I now know the drugs stopped my symptoms but did nothing for the Endo - but left me with permanent side effects. Now considering excision surgery again after 15 years - wish I had done that all those years back had I known better. Saw a specialist yesterday and menopause will not cure Endo if the patches are elsewhere - why would it - also they may suggest you need to have ovaries removed as well to ensure the pain goes away - again I would avoid anyone suggesting this as it has long term health implications and also isn't a guaranteed cure either. Good luck with the specialist but do also carry on with research on whatever you can the pros and cons of the options offered to you.

  • Hi I have been through a hysterectomy after exhausting every avenue - I put on prostap and told that the hysterectomy would work. My insides were in such a mess with everything stuck together which made surgery harder as they were worried about nicking my bowel or bladder when separating everything, they also found a large endometrial cyst so I had everything removed. For the 1st 6 months it.was fantastic and then they introduced hrt which has made the endometriosis grow back and I am in as much pain now as I.was before the op. I am now pushing to go to the endometriosis centre - wish I'd had the option of this prior to surgery - you've done the right thing - hope it works out for you

  • Linnie,

    Really feel for you. At least you will now hopefully get all the endo excised properly. Refer to Lindle's post on finding an endo specialist healthunlocked.com/endometr... in particular the code of practice for GPs. I say this because you write that you are "now pushing". That indicates to me that something isn't easy about it even if it is just your apprehension that your GP won't listen when you raise the issue. Lindle's post will give you the confidence and tools to work your way through the process. Good luck.

  • Hi brownlow - you're right I'm having issues getting referred. Saw my gp yesterday who told me that she didn't think she could refer me due to budget restrictions as the clinic is in a different health board - even although they were able to refer me to the menopause clinic which is in the same.health board as the endometriosis clinic. I have a gynae appt on 23rd and my gp says that they should be able to refer me so keeping my fingers crossed. I'll deffo have a read of the link you posted - thank you

  • That's like saying "I'm not prepared to stick my neck out for you and do the right thing as I'd rather my budget looks good at the end of the year so I'm afraid you're going to have to stay ill and be treated by someone cheaper who doesn't know what they're doing." She's passing the buck to the gynae to refer you so the impact on the budget is not down to her.

    If you don't get referred do come back here for help. PM me if you need to. The route you are going will take a bit longer because you will have to wait for the gynae appointment and then, if you are referred on to an endo specialist, you'll have another wait. Do consider approaching your GP again to pressure her once you've read Lindle's post. Writing letters is also sometimes effective. A GP has to reply to a letter and it would be difficult for her to defend her current position.

    Whatever happens, don't settle for less than you deserve.

  • Thanks I will do x

  • Hear hear 👏 😀

  • Oh my goodness. Endo that is stimulated by oestrogen replacement has been found to be a more aggressive form. It is vital that you get it thoroughly excised. Click my name and have a look at my post on postmenopausal endo and how to get to see a specialist in case you encounter any resistance and need to support your right with evidence. The sad thing is that these centres have been running for 5 years yet the majority of GPs don't even know about them. There is a major flaw in the referral system x

  • My GP didn't have a clue when I asked for a referral, luckily I took print outs from all of Lindle's posts. When the secretary was writing the letter despite me leaving them a copy of the list from the BSGE website she had to phone them up repeatedly to make sure she was doing it right; it took 2 weeks to get it written and sent over. I now know the Consultant has the referral (I rang and checked with the hospital) and is deciding who needs to see me and in what clinic so I should have an appointment letter within the next week :)

  • That is exactly what I have been told by my gynies consultant registrar upon reading his report findings yesterday....you seem to be the same as me symptom wise amazing to see linnie32 what you have been through 😀

  • Thank you for all the replies ladies. So pleased I made the right decision and didn't rush into the prostap.It was actually reading posts on here that made my mind up about seeing a specialist, so thank you 😀 All these posts have made me feel so much better this morning, because I was worried about it x x x I'm going to do some more research, because I'm still not fully up to scratch on everything yet, so when I see the specialist I'll hopefully have all the info I need to make the right choice. Once again thank you for all the help x x x

  • That's great that you feel better. Nothing worse than being worried and turning things over in your head. Good luck. x

  • I know, I felt terrible yesterday wondering if I had done the right thing, but feel so much happier about it today. Thank you x x

  • Definitely see the specialist! Hysterectomy is NOT a cure for endometriosis..I had that done and the endo still remained active...the hysterectomy caused many other issues on top of the endo...so You definitely made the right decision!

  • Thanks hun, glad I made the right decision 😀 x sorry to hear about your problems. Let's hope something can be done for everyone who suffers from this crap disease x x

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