Menopause Worries

Hi everyone

I have just had a follow up consultant's appointment following a diagnostic laparoscopy and have been told that there is too much endo to remove and I will need to have injections to shut down my ovaries. I wasn't prepared for that diagnosis and am a bit shell shocked. The registrar I saw was not at all empathetic and rushed me into agreeing that this is the best course of action but I really don't know. (I have just turned 41.) Does anyone have any advice or experience that they wouldn't mind sharing?

Many thanks in advance

Elaine

26 Replies

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  • Hi Elaine - was this in a general gynaecology department and where are you in the UK?

  • Hi - it was via the Norfolk & Norwich University Hospital and yes I believe it was the general gynae dept. I've checked the link you've suggested in replies to other members and can see that my consultant who I unfortunately didn't get to see is a member of the recommended group.

  • Hi Elaine - it is very worrying that a general gynaecologist in a hospital where there is a centre has told you that you have too much endo to remove and that the only treatment is the injections. Obviously other members can tell of their experience but this treatment in your circumstances is against NHS protocol. The NHS contract for the treatment of severe endo requires that it is excised wherever it may be located and this is to be done by highly skilled surgeons who have completed the RCOG advanced training module over at least two years, or the equivalent. It specifically states that medications, including GnRH agonists, are ineffective for severe disease.

    'Medical treatment is only of benefit in mild cases. Surgical excision is the recommended treatment in moderate or severe disease (2).

    Removing endometriosis from the pelvic tissues requires considerable surgical skill and expertise, as it is often close to vital structures like the ureter, bladder or bowel. It is best

    performed using laparoscopic surgery with two skilled laparoscopic surgeons working together, as this enables excellent visualisation of the deep pelvis which facilitates the very delicate surgery required and joint expertise enables joint decision making during critical

    steps of the operation. In contrast open surgery often results in incomplete excision of the disease. Incomplete excision will result in inadequate treatment, with failure to resolve symptoms and makes repeat surgery even more difficult ...The overarching principle for surgical excision of severe endometriosis in a specialist centre

    is that all endometriosis is to be removed, irrespective of site. This accords with national guidance (2) and is considered by current experts to be the most effective treatment.'

    england.nhs.uk/wp-content/u...

    I would recommend that you write to the named gynaecologist at the centre describing your experience in general gynaecology in his hospital and asking why NHS protocol is not being followed according the the NHS England contract for treatment of severe endo and whether you should seek referral to another centre for a second opinion as to whether excision is not possible in your case. And copy it to the gynaecologist.

    If this treatment is suggested with a view to doing a hysterectomy and remove your ovaries then this is NOT a cure for endo, especially when severe. It can produce oestrogen from within its own cells and you would have to take oestrogen replacement which can continue to feed it. It would be a very rare case that one of the best centres could not excise.

  • Thank you I was hoping you might reply - you seem to be the woman in the know!! I am considering making a private appointment with the Consultant himself - there is a 6 month waiting list on the NHS. I'll look into what you've advised more carefully - thanks very much for responding, Elaine

  • If you have the funds to see a specialist (I assume you mean the endo centre consultant and not the general gynae) then you will have the opportunity to ask him why you have been dealt with in general gynaecology but putting things in writing can be very powerful as it can't be disputed and acts as proof of what you 'said'. I still think that is a suggestion you might consider rather than paying £200 or so and perhaps only having limited time.

  • Thank you again, I appreciate you replying. The general Consultant is also the specialist Consultant (Mr Morris - he has a very good reputation) but I didn't get to see him - I saw one of his Registrars. The plan is to wait and see what the Registrar's letter advises (as he was not 100% that the suggested course of action would be agreed by Mr Morris) and if I am not entirely confident I am going to make an appointment to see Mr Morris directly. The Registrar wasn't sure why I was there, hadn't looked at the photographs of the diagnostic laparascopy before I saw him, had no empathy and I just generally didn't have faith in him.

  • Yes, see what the letter says after he has hopefully discussed things with the specialist and come back if you have any worries. x

  • Will do, thanks again x

  • I was put on this and it was very effective x

  • Hi Elaine - I had this injection for 6 months with add back hrt and my pain disappeared. I then went on to have my ovaries removed laparoscopically and recovered well within 3 weeks. Unfortunately after a few months of hrt the endo pain returned (I also have Adenomyosis) and I'm now off hrt as this could be feeding the endo (what joy that is... ) and no pain but flushes are coming fast and furious. I'm 44 and back to see doc in April. Good luck! Julie xx

  • Thanks Julie, I appreciate you replying. I guess I'll just have to give it a go and see how it works for me, it's all a little scary. Good luck to you too and thanks again x

  • I had my first injection yesterday and am waiting to see if I get any relief. Worst thing was I came on on Thursday so was in agony when they did the injection. If you want I am happy to keep you updated how I'm finding it so you have a buddy x x

  • I would LOVE that, thank you so much. I'm feeling better just having read some of the posts on here. It's nice to know I'm not alone. I hope the injections work for you. Are you having HRT? I think that's what I'm most concerned about. Thanks again xx

  • Yes had mixed instructions about when to take it but started it this morning. Am taking livial. I'm 39 too. My mum and nan both went through menopause in their early forties so it probably wasn't that far away to be honest.

  • Hi Elaine,

    I have had a lapocoscopy and an MRI and now I am on the injections, I am on month 4 as you can only have them for up to 6 months - I am now on waiting list for a hysterectomy the Gyni has out me on the injections to see if it helped me with the pains I was getting, I am not pain fee but I have e to be honest I am more active and the pain isn't as strong I have to admit I feel better on the injections, it is to shut everything down to see if you would need a hysterectomy if your not neede this I wouldn't be on them - I am 45 now and I have had my children - the pain I was getting was serve pelvic pain and around my lower back - hope this helps

    I have endo and Ameysoisi can't spell that one in my uterus..

    Laura x

  • Thanks Laura, that's good to know. I've just come on too, despite being on the POP for a month, and am feeling rough. My registrar said he wasn't sure if my lower back pain was connected to the endo so I'm reassured (in a way!) that you experience it too. Best of luck and thanks again for replying xx

  • I had serve lower back pain every day it was constant - since I have been on the injections it has helped massively if I get the pain now it isn't as serve - x

  • Hi! I think what he meant was that it was too severe to remove during the diagnostic lap! If it wasn't severe or too widespread then he could have lasered it off during the procedure. A surgical excision is major surgery and involves the endo tissue being removed with a scalpel and some of the surrounding tissue taken too. Most hospitals only do one of these procedures per fortnight as it requires two very skilled consultant surgeons working together, so a big plan has to be made and coordinated in terms of anaesthesia, nursing, and a bed in high dependency available should you need it! I was diagnosed when I was just 16 with 4 grapefruit sized cysts removed and 6 separate patches throughout my pelvis lasered. When my initial scan results came back before the surgery, only one of the cysts was visible and they thought it was a double womb, so I had 2surgeons operate, so they were able to treat it while they were in there! I have had zoladex injections several times. My first course was when I was 17 and lasted 9 months. I got terrible hot flushes so my consultant put me on hrt but I couldn't take it as it made me really ill. Then my mum got breast cancer, so I'm really pleased now that I didn't take hrt for long! I always got regrowth after each lap (I've had 5 laser procedures), and have tried every pill and am on my second mirena (I'm now 33).

    The only thing I would say about the zoladex is that if you still wanted to conceive there is a risk of it bringing on the natural menopause. It isn't the most pleasant injection as its in the stomach, and I learnt to check whether the person doing it has done it lots before. My nurse at my Drs had worked on a cancer ward/outpatients and they give it to men with prostate cancer so she had given lots before, and it didn't hurt as much lol! I allowed a student nurse to do it ONCE and never again, it didn't help that I always bleed a lot with any injection, blood test etc, and she nearly fainted lol!! Side effect wise, I got the bad hot flushes that came in waves, a few cold sweats, but I learnt that I couldn't put anything on my neck (clothes, scarves, collars, even necklaces!). In my first course I got violent sickness every other week, which I later learnt was a calcium deficiency but my idiot GP didn't pick it up so I suffered for months with that! It was probably to do with the age I was as it is quite rare to get it with the injections!

    I would imagine that your hospital consultant/team is thinking that if you can get some relief from the injections, you may be able to wait and just have a hysterectomy instead of putting you through major surgery only to have to have a hysterectomy done a few years later! The injection works by blocking the hormones that make you ovulate. In turn this reduces the blood flow to the endometriosis tissue which causes it to shrink. They often now give a 3 month course of the injections before a lap procedure as it also reduces blood flow to the entire area making the risks of surgery related blood loss less! If you are in any way concerned and can afford a private consultation I would go for it!

    Advice for next time in outpatients, phone up when you get the appt through and ask if the consultant is due in on that day...if not ask for a change of date, then when you arrive request to see the consultant, you may have a longer wait but it's normally worth it! Hope my experience helps a bit...I do have a long history of severe endo but I also have a PhD in medicine and although I don't have a licence to practice medicine I do have an understanding of the theories involved, and can hopefully offer a slightly educated opinion 😀! I hope you will get everything sorted soon xxx

  • I forgot to say I've also had the major surgery I was talking about in 2007, and it's definitely not a procedure to take lightly! Xxx

  • Thank you for replying - so much to think about! The registrar said that there is too much to take away now. I've had one other laparoscopy where they lasered the endo off) but that was over 20 years ago and I was hoping the same would happen this time. He said they'd have to remove part of my stomach! I just feel I didn't get the whole story and might book an appointment with the Consultant at the local Spire hosp as I could get to see him within 2 wks that way. Anyway, thanks for sharing your experience with me, it's much appreciated xx

  • Hi, I've just seen my consultant and he has put me on prostap. I'm due it next week, I'm due a laparoscopy in 3 months and had a hysterectomy in July last year for adenomyosis, I'm taking injection to see if he should remove overies, it's all very confusing, nothing shows up on my MRI so still no the wiser as to what's happening inside,

  • Hi Elaine,

    I am 40 and only diagnosed with endo after a laparoscopy in January this year. They also did not remove all of it and I am currently on Zoladex injections which have put me in to an 'artificial meonopause' I still get symptoms of my endo although not as bad, I am back in 3 months for a further checkup which point I will have had 6 injections.

    The only major side effect I have had is hot flushes.

    Have you been told how long your injections would be for?

    I have been told that when I go back it will be to decide if I have a hysterectomy.

    I hope you are ok.

    Susan

  • Hello Susan

    Thank you very much for replying. That's interesting, I think I am mostly scared of the idea of the menopause and having to take HRT and potentially feeling ill with that rather than the endo. It's difficult to know what to do. I didn't have a particularly successful consultation and have been left feeling like I don't have the full picture so am thinking about paying to see the Consultant (I saw the Registrar) privately and hopefully gain a fuller understanding of what's going on. There was no mention of how many injections or anything like that. Someone has said that the injections are in your stomach and awful - is that right? Are you not taking HRT? I read somewhere that enforced menopause can be much worse than natural. Too many questions, I'm sorry!

    Elaine

  • Hi Elaine,

    Don't apologise. .its great to talk about it. I have only just found this site and finally feel like I'm not going mad. Started to think the pain was in my head!!! Yes they are in your stomach. ...its ok..stings abit and im normally uncomfortable that day and next but not unbearable. I'm not on hrt. .I was offered medication for my flushes but said no as feel I can cope with them. Time will tell!!!!

    Do keep in touch let us know how you get on

    Susan

  • Hi Susan

    Yes, it really is a relief to be able to talk about it. I'm like you, I only found this site after searching the internet after my appointment and I'm so pleased I did.

    The registrar didn't suggest there was any choice whether I take the HRT or not. Just one more question I'll have for the consultant. You've put my mind at rest re the injections, thank you. I guess everyone has different experiences but they don't sound as horrific as someone else has suggested.

    Will definitely keep in touch, thanks again

    Elaine

  • Hi, I was on Prostrap for 6 months last year and had all the worries you are having. I had my ovaries removed in November and it's the best thing I ever did. I feel like a new woman. Prostrap injections can sometimes be a bit of a rough ride and make you feel ill at times. I wasn't very well on it and couldn't go to work, but I stuck with it and I am so glad I did. I am back a work now. I am having hot flushes, but I am not on HRT. I can cope with the flushes, because apart from them, I feel wonderful. I am 48.

    Good luck.

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