Deep Infiltrating Endometriosis

I've just had a laparoscopy carried out last week, which I'm recovering well from but had a mirena coil fitted to help with the heavy painful periods. They have said that I need to give it at least three to six months to settle down, but have been getting really bad period pains which normally sub-side after about an hour but do have to take pain relief to help. Can anyone tell me if this is normal?.

I've been advised that I will need a full hysterectomy which will include the removal of ovaries as well, so will go into surgical menopause and will have to take HRT. I have another consultation in February to find out more etc..

14 Replies

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  • Hi, is your hysterectomy for endo, or another reason, I've had a hysterectomy for Adenomyosis and still getting endo pain, due to my endo not being dealt with pro palsy by a specialist, a hysterectomy for endo is not advised from most specialist,

    Are you being seen a a BSGE specialist centre or by a gyne, ???

    How old are you, you will need HRT and this will add back the estogen that your body will lose, this is to help protect your bones amongst other things, but also add back to the endo, especially if it's not excised fully from all areas,

    Good luck xxx

  • The hysterectomy is for the endo plus I have fibroid which need dealing with as well. The Endo is attached to certainly organs which need dealing with so not sure if they will be doing all the fibroids at the same time, but will hopefully find out more in February but have got a call into the consultants office. I'm 50 next May so will be on HRT for a couple of years I expect.

    I'm being dealt with by the gyne clinic at RSCH.

    The mirena coil seems to be causing me more problems at the moment, but just go to give it a chance I suppose!!

  • I would get referred to a specialist on the BSGE list, I Didn't and now wish I had, I'm under one now, he is sending me for MRI,

    My hysterectomy hasn't helped with my endo at all

    I hope you have more luck, but they must complacent full excision surgery, at the same time, otherwise, it will carry on causing symptoms,

    Xx

  • I'm afraid I cannot afford to go private, so will have to go with the flow with our wonderful NHS as never had problems with them in the past. Good luck with your treatment as well.

    :-)

    xx

  • Hi Linda the specialists on the list Tbaog is talking about are nhs they are just properly trained with endo. Look up Lindle on here , she can direct you on how to find one

  • How do I find Lindle on here?

  • I'm not sure how to put a link on but if you look through some of the posts you find her name on some responses just click on her name

  • Hi Lynda, the BSGE list, is a list of surgeons through the nhs, that are more skilled in the endometriosis excision surgery, unfortunately I couldn't afford to go private either, and I agree the nhs is a wonder thing,

    Have a look at a lady called Lindle, she has written posts regarding specialist, there is a nhs contract that states we ladies with deep endo or rectovaginal endo SHOULD be referred to one of these centres, unfortunately most of the medical profession do not know these centres exist, this being the case with my GP, but under Nhs our choice, we can ask to be referred,

    My only worry with you, is the same thing will happen that happened to me, I see a very good gyne surgeon, and he did a great job with my hysterectomy, but I fear, he hasn't excised all my endo and that's why I'm still in pain,

    Good luck, xxx

  • Hi,

    I can't comment on the Hysterectomy part of your question, but I also had a Laparoscopy just coming up 2 weeks ago & Coil fitted - I'm also getting pains still, which I did get after having my previous Coil fitted (earlier this year) - they did settle down some after a few weeks, so hang in there! My new best friend is an electric Heat Pad - it's been my saviour for the last week or so!!

    Hope you don't mind me asking, but are you bleeding at all still?? I haven't stopped yet since the op, but trying to think positive & hope it's going to hurry up & stop pretty soon! :-s

    Hope you keep feeling better x

  • Hi, thanks for your positive response.

    I've been spotting every day since it was fitted on the 21st December, but not had a full blown period yet. My normal cycle would mean my next period would be due on the 13th January, so we will just wait see what happens. I trying to combat the pain with paracetamol and ibuprofen which is what the hospital prescribed.

    Can I ask why you had one fitted and why you had to have it changed so quickly?

    Thanks for your feed back.

  • That's a bit of a comfort then - will keep my fingers crossed and be patient! My cycle is a complete mess, as I had been on Norethisterone since around April/May to stop my bleeding, so if I make it right from when I came off that mine should be due 2 days after you! Yes, same here, but I've been having Codeine too, which does help!

    I had my 1st one fitted at my 2nd lap for endo back in June to try & control my cycle (which has nearly always been haywire) & near-constant bleeding, but from the day I had my 2nd op the pain really never went away, so I was firstly given a course of Zoladex injections (which at the time didn't appear to help a lot), but Gynae thought that the Mirena was perhaps he cause of my pain, so that was whipped out back in October, but unfortunately made no difference, so hence I had another one fitted at my most recent lap!

    They do say it can take 6 months for the Coil to settle things down, which does seem a rather depressing length of time, but will certainly be worth it in the long run if it does it's job :-)

  • Hi - it sounds as though you are being treated totally inappropriately unless you are actually at the Brighton Endo centre. We have a system now under which we have 'accredited' centres monitored by the British Society of Gynaecological Endoscopy (BSGE) to ensure that women with severe endo are treated appropriately. You don't give details of deeply infiltrating endo in your post but do so in the title so presumably you have severe endo and we have a contract in England that requires that this must only be dealt with in such a centre where the surgeons have done advanced excision training and have years of experience under their belt of complex surgery. If you are being treated in general gynaecology then this is a breach of NHS contract. Please note the majority of centres are on the NHS and in fact women are seemingly often getting what looks like better care than when going privately as a lot of surgeons don't seem to have the attendant other surgeons present that are a requirement of the centres, such as a bowel and urology surgeon. I can't comment on the Brighton centre but it is on the list of 'provisional' centres awaiting accreditation and you can check here if your surgeon is one of those named:

    bsge.org.uk/ec-BSGE-provisi...

    You don't say what was done if anything at the lap, or if they are just working on the basis that a hysterectomy will cure all your problems which unfortunately it is unlikely to. The most critical requirement is to have all your endo excised which will be a complex procedure with infiltrating disease, depending on what is being infiltrated. If it is your bowel then this needs an excision expert working with a bowel expert surgeon and you may be told you may need a bowel resection, but even if this is the case it will usually be temporary and not as scary as it may be presented to you.

    So your first action needs to be to establish if you are being seen at the centre or in general gynaecology and if the latter then you should not consider surgery with them. At your age it sounds as though a hysterectomy and ovary removal may well be appropriate but only if all endo is excised too. Unfortunately endo can continue after the removal of the organs by various means to include stimulation by HRT and by the endo also producing oestrogen in its own cells. At age 50 you do not need to take HRT and healthy women without endo are not advised to take it after then. If you can bear the symptoms of sudden menopause and get through them then it would probably be best to avoid it but that has to be a personal choice. If you do decide to take it be sure that your blood levels are very low (around 200 - 250 pmol/l) and get regular blood tests done at least every 6 months.

    Click on my name and have a look at my post on how to find a specialist and on rectovaginal endo as you probably have that given the nature of your title. You can see anyone you want and with severe disease it is worth looking around and always be sure to ask for complication rates for the surgery you will need. Get back by private message if you have problems with a referral. x

  • I'm being treated at the Royal Surrey in Guildford, so I'm a bit confused by your message because these guys must know what they are talking about and what treatment is going to be the best course of action. I'm in the process of emailing them tomorrow with a list of questions and concerns I have.

    I do feel that the internet is a good tool to a certain extent but then it can be misleading and very negative.

    I will be having a full hysterectomy plus the endometriosis excised too, plus I have fibroids which at present unsure where but do have several one begin large. I have a nodules close to the rectum as well BUT because I've not spoken to anyone, as of yet, I do not know the full extent of the treatment going forward so I would personally like to go with the advise that they give me.

    It is all very scary and feel quite alone at present but I will be attending a support group held at the RSCH later this month.

  • Hi - I'm not sure what you mean by the internet being misleading and negative in this regard because the BSGE is an organisation backed by and working in conjunction with the NHS under the recommendations and guidance of RCOG with whom all gynaecologists are registered and with whose guidance all must comply. Endo UK backs the BSGE centres and this internet support group of Endo UK is itself backed by the NICE guidelines. The reason for the BSGE centres is not only to hopefully maintain a standard of care but also to bring together and record data for all complex cases undertaken and to monitor complication rates etc in order to establish consistent standards. But ultimately what matters is that you are happy with the care you are receiving. x

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