What Next?

I had a laparoscopy four weeks ago, stage 2 endometriosis was found and removed (I was shown the pictures).  I was also informed that I have a fibroid which is blocking the neck of my womb.  I was advised by my gynaecologist that my only option is to have a hysterectomy, removing the womb but leaving the ovaries.  I have since had a second opinion from a specialist in Elland, West Yorkshire (I am sure you know who he is).  He informed me that I will still have endometriosis and will probably face more procedures to remove it unless I have it removed using TPE and also at the same time he would perform a hysterectomy as the fibroid will just keep getting larger and will cause issues as well.  Has anyone else had TPE procedure carried out and was it successful.  I am only asking as although I do have insurance there is still quite a large shortfall - but if the procedure is a cure then I am happy to pay to be pain free.  Also, I am still in pain from the lap which was done, just internal bruising but it does not seem to be getting any better.  I also feel so fortunate that I also have IC which was diagnosed last May and I am on meds and regular instillations for this.  I was told that IC and endometriosis are usually found together, if you have one you are more than likely to have the other.  I am fortunate in that I live only a few miles away from Elland so do not have to travel the country for appointments.  I am just not sure what to do - Do I just have a hysterectomy done by my original gynae and see what happens or have both done at the same time?

5 Replies

  • I would say both, I had a hysterectomy in July for adenomyosis, and removal of endo in march last year both by a general gyne, I'm still in pain and am now waiting another laparoscopy to check if he has missed endo, km pretty sure he has, so if you can get to see the best and have thorough excision and hysterectomy, that's the way to go, good luck. 

  • Hi so long as the endo is completely removed you shouldn't need to keep having surgery for it, but yes I agree with Tboag that it would be better to have both done at the same time.good luck.

  • I don't know enough about this to comment fully, but I would suggest you email (Private Message) 'Lindle' who often posts on here.  She is an amazing mine of information and incredibly helpful and supportive.  If the lap was done by a general gynaecologist then it is quite possible that endo was missed - or were you being treated in one of the 'Specialist Endo Centres' ?    And/or ... is that where the 'Elland' person works from? 

    If you don't know about the Specialist Endo Clinics, I would also check back through Lindle's posts, although a lot of others on here can provide information and personal experience - as it seems that some of these Centres are better than others. 

    NB I know from regularly skimming the site,   that 'Endo UK' ask that we don't 'name' individual Medics or Centres on here, so I would again 'Private Message' anyone who you think may have useful info. 

    Also, although it's less of an issue on this 'Endo' site, compared to other sites I use,  but I have noticed that the number of participants on the site falls off at weekends, so if you don't get the detailed info you need in a day or so, it might be worth re-posting. 

    I do hope you get sorted soon.

  • Hi Hun I've just looked on the BSGE website and know you are with a specialist centre. So I would recommend you stay with them and have both done at the same  time. Good luck .

  • I am due to have TPE with Mr.T in 3 weeks, I wish I could tell you now to help you!

    However, I have a friend who also had TPE done with him and she is fantastic. I saw her 2 months after and she was still had a couple of pains, which he said was normal for early on, but she had cleaned her kitchen after 2 weeks! She is doing really well now, she's a Pilates instructor.

    All I can offer is that I have total faith in him that the endo won't return in the area he excises.  You could go with the general gynae if you are confident that he can do the same job? 

     Sorry if not much help, hope it all goes well xx

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