So mad and don,t know what to do next?

Yesterday I underwent a cystocopy to help with my case towards a decesion for hysterectomy after 20 years of treatments and suffering.What a disaster!

Firstly the consultant told me he would make a decesion or at least give me some indication of wether I would be going for hysterectomy as it is my final option have tried everything else am currently on menopause injection and he said only 6months allowed.He was meant to come and discuss this afterwards with me and my husband and didn,t just came to me as i was coming round from cystocopy and said he couldn,t take a biopsy and I was to be put on the list for a 2nd cytoscopy which I no idea how long that will take and no one will say.I left feeling forced into having the next injection which I am struggling with,but if i don,t i am bed bound and cannot even walk ,and no idea.I was very upset and so was my husband as he had lost £150 days wage to come with me as the consultant said decesions are to be made,he also then said i have ladies who have been on this injection for over a year,but i never agreed to that.I have always been on hormones and want it no longer.It was a means to an end thing for me as he told me he was using it as a diagnostic tool.Help.

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  • I am so very sorry to hear of you plight.

    Have you considered asking for a referral? I don't know whether your current consultant is an endo surgeon or a general gynae. To be honest, the fact that he has offered you hormone treatment and is then recommending hysterectomy does not sound like he is an endo surgeon. They generally offer excision surgery to remove endo rather than pussying around with drugs that are only effective for as long as they are taken. . and with the side effects of effectively putting your body into 'old age' which is not satisfactory for a young woman . . . as my consultant tactfully put it. An endo specialist would generally view hormone treatment as a form of help whilst waiting for surgery rather than as a long term treatment as it does not get rid of endo but temporarily supresses it.

    General gynaes are more inclined to go with a hysterectomy because that is their area of expertise but you need one who is a specialist in excision surgery alongside hysterectomy.

    Some still hold with the misguided views, like my first consultant did, that endo is a disease of the uterus and removing that will cure you and recommend removal of ovaries to prevent eostrogens causing more endo (then they put you on HRT!). However, unless you have excision surgery to remove endo from any other areas in your abdomen - you will have been through a hysterectomy which will only relieve anenomyosis but any other endo would remain. That is a fine solution if you really do have just adenomyosis (endo in uterine muscle rather than just on the surface). However, they can never be sure you even have this in the muscle until after the op and histology is done. They can only go by your symptoms and whether your uterus seems 'bulked'.

    My first consultant, who was a general gynae, did a lap and said I was a complete mess (Sate 4 endo). She said best thing for me was a radical hysterectomy, and hrt because of my age. Excision surgery was never mentioned to me at all and, later when I challenged her about this, admitted that she only does 'a little excision'. One has to ask why she did not even tell me about excision let alone give me the choice of a referral to someone who did! Her experience of excision surgery would never have been great enough to sort me out alongside a hysterectomy!

    I did research that also backed up my misgivings of this being the best I could hope for. If it had been the answer, believe you me I would have done anything to be free of endo. I went through enormous trauma at that time trying to make sense of it and find a treatment and an outcome that I found acceptable.

    I found an endo surgeon and got my GP to refer me. I had to go private as I was way outside of his catchment area and had to travel up to Yorkshire fron London. He specialises in 'radical peritoneum excision surgery' for endo. I underwent a 7.5 hour keyhole surgery where the whole lining of my pelvis was removed, including all seen and unseen endo - bladder and bowel and ovaries which had previously been stuck up with endo completely out of their normal place were freed up and put back). He temporarily suspended my ovaries to prevent them from adhering to the healing peritoneum.

    He did suspect adenemyosis and said a hysterectomy at the same time as total excision would likely be to my benefit but said you can never be sure you have it. However, I took the decision to undergo radical excision and wait and see whether that did the trick - if not, I could go back later for 'keyhole hysterectomy'.

    That was 18 months ago now and I can say that I have my life back with no signs of endo or endo pain at all. That is not to say I won't in the future but this has the best chance of being symptom free longer term. What it did was to put me back in the position (as far as possible) before I had endo - so I did not have a hysterectomy or removal of my ovaries. Had I still experienced pain I would have gone back for the hysterectomy but not removal of ovaries.

    Have a look at the website of Dr A K Trehan. It is unfortunate that there are not more endo surgeons out there like him and you need to be in his catchment area to see him on NHS.

    I have posted before to explain the differences between laser treatment, patch excision and radical excision as this can help understand what is on offer.

    I really suggest you ask for a referral and do some research on endo surgeons in your area and whether they offer excision surgery. Patch excision is as it says, removals of patches of endo. For more extensive endo, radical peritoneum excision removes all of it, even that which is not yet visible and has by the best outcome.

  • Hi Littlestar,

    I am sorry to hear what you are going through. I am experiencing similar. I am on zoladex and went to see consultant last wednesday to ask for hyst with ovary removal. My GP sent them a letter in May to say this is what I was going to ask (for them to be prepared and get their ar**s in gear). So my husband too took time off work to attend, and no decision was made and have been told I need to see the top consultant for this decision. ROAR!

    I think that for an operationlike this you need to push to see the top consultant, so a decision can be made there and then, as although the other consultants are 'qualified', I get the feeling they can't give the go-ahead unless the top man has agreed to it. So maybe try and push to see the top consultant?

    I really hope you get in and get this sorted, as like you I will be on my 7th injection in 3 weeks, and it is really getting me down - oh yeah, and the counselling I put in for 6 weeks ago to deal with coping with this illness (until I get a hyst), I can start in 14 weeks!

    We have seriously thought about going private, it costs around £4,650 and BMI Healthcare have a 6 month inerst free thing going on. This cost includes surgeon, anesthetice (sorry bad spelling!), and the few days aftercare in hospital. We would have to take out a loan for this, but we are really considering this if I have no joy with the top consultant.

    Sending you all the luck in the world.

    Noggs xxx

  • Hi all, we also looked at private options my gynea yesterday advised againts this as I his experience its never as simple as a normal hysterctomy and the complications could end up with costing thousands more, also to the lady that had the excision surgery, I had this and was endo free for two years another two years on and sadly back to stage 4 with all the challenges this faces, this time I'm having hysterctomy bowel recection potential if they cannot shave the nodule off my colon and excision surgery I am so much worse now than I was and while its not a one hindered percent certainty of cure am not willing to risk again.... Sadly I m proof that there is no cure at present ..... Good luck littlestar I hope it all gets sorted its an uphil struggle..... The one thing I have done is paid see my consultant that made a real difference and cut the Nhs cue also have you thought about a second opinion x

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