Advice needed please. Should I opt for full Endo Excision plus Subtotal Hysterectomy and if so, who should perform the surgery?

Had my appointment with the surgeon who carried out my Laparoscopy yesterday. I was hoping to get a date for my hysterectomy as I was led to believe that I was to be put on the waiting list in December 15 when I started 6 months of Zoladex treatment. It turns out that this wasnt done so I was only placed on the waiting list yesterday. She has put me down as a priority case rather than standard, so hopefully I should get my surgery sooner but the wait is still between 3 - 9 months frown emoticon She said I may be offered surgery sooner if I agreed to have another surgeon carry it out but she advised against this as she wants to perform the surgery, having operated on me before. She has also changed her mind about wanting to remove my ovaries and now wants to take them. When I asked if this was absolutely necessary she said it was as it would reduce the growth of Endo - everything Ive read or been told previously goes against this as I thought Endo had its own source of hormones for regrowth? I queried whether or not there was Endo on my bladder (due to many bladder symptoms) after my Laparoscopy and she said there wasn't. However, she told me yesterday that she had removed Endo from between my bladder and uterus during surgery. She has finally prescribed Tibalone to counteract the symptoms of the Zoladex injections, which will now be extended until I am nearer my surgery date. She has said that as she plans to take my ovaries I will need to be on HRT long term which will increase the risk of breast cancer? I had previously had no bleeding while on Zoladex but last month (5 months in) I had a bleed. It was nowhere near as heavy or long as previous periods but was out of the blue. The daily pain I have has been improved since the bleed and I do get some relief from the pain for a week or so after each Zoladex injection. Ive not been able to work since January this year due to the pain, fatigue and bladder and bowel symptoms. Apologies for the long post but I could really use some advice from you lovely ladies.. As some of you know I had a private consultation with Mr Penketh in Cardiff (Endo specialist) in February, who has now put me on his NHS list and wants to do a full excision of my Stage 4 Endo (I have adenomyosis and PCOS also). My question is, do I allow my original surgeon to do the hysterectomy or push for Mr Penketh to do both surgeries? Im a single mother to two teenagers and money is tight so need to get back to work asap as you can imagine.

UPDATE - IVE JUST TELEPHONED THE HOSPITAL IN CARDIFF WHERE I SHOULD NOW BE REGISTERED AS AN NHS PATIENT WITH MR PENKETH TO BE TOLD THAT I AM NOT ON THEIR LIST AND SHE WILL HAVE TO CHASE IT UP WITH HIM!

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  • Hi, firstly let me tell you my story, I was diagnosed with endo and adenomyosis from a laparoscopy completed by a general gyne, very experienced in laps and excision work, during the lap he removed a nodule and endo on uterosacral ligaments, and ureter, unfortunately I had very little releif, so in July I had a hysterectomy leaving overies in, again not much releif apart from the periods , so I'm now on zolodex and hrt and have thankfully seen a bsge specialist, I'm on the list for a laparoscopy, and thorough excision, if anything has been missed, I have bladder and bowel issues, not major, but not normal, and still have pain most days, my bsge consultant said if I get on with zolodex he will remove overies, as thus should reduce the risk of regrowth, endo can still grow from the estrogen our bodies produce without overies, but less likely, apparently, 

    So, my advice to you would be, opt for the bsge specialist surgeon every time, nsh protocol states we should only be operated on in these centres if endo is in certain places, ie bladder and bowel, pod, bsge specialist have completed a further excision course, and are much more equip to deal with you, xx

  • Thank you for sharing your experience and offering advice. I suppose I really knew it is best to wait for specialist treatment. Do you regret having the hysterectomy? This is my concern, that if I had it and had no relief then I would wish I hadn't put myself through it.x

  • No I don't regret it, my periods were getting so bad, my 3rd son was 9:12 and tbh I was feeling like I was giving birth to him every 3 weeks, I was a mess, unfortunately because you have both like me, it's difficult to differentiate between symtons and they are very similar, so in my opinion the best option is hysterectomy along side thorough excision, and if you have to wait a while longer it will be better in the long run, I wish I had been given the option of bsge back then, but at least I'm with one now, xx

  • Hi I totally agree with Tboag push for the specialist.

  • Thanks for the advice Jean.x

  • Hi - so the general gynaecologist is intending to do a hysterectomy for stage 4 endo and adenomyosis? It seems she has decided to take your ovaries and to prevent the endo from growing and then give you HRT which is effectively medically replacing the ovaries! This consultant is working totally against NHS protocol that requires stage 4 endo only to be dealt with in a BSGE centre and it must all be excised. She will not have the advanced surgical skills to carry out such surgery without most likely causing you significant damage. Just removing a uterus in someone with stage 4 is not straightforward. Please can you click on my name and have a look at my post on the treatment pathway that gives the provisions that confirm you must be seen in a centre for full excision at the same time as the hysterectomy. If your ovaries can be saved then they must be. But if not please note that the evidence shows no increased risk of breast cancer for women on oestrogen replacement before the age of 51 which is the age ALL women should stop HRT because it is age that increases the risk. If you do have to have your ovaries out the important thing will be to have regular oestrogen blood tests to ensure the level doesn't go high enough to stimulate any bits of endo that might have got left behind. Aim for no more than 400 pmol/litre. I should make a note of this for future reference if appropriate.

  • Thanks for the reply and the advice. Im so exhausted and frustrated by all this (as I know all you ladies must be) that I just want answers and be able to make the correct informed decision in order to give myself the best shot at returning to some sort of normality.x

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