Recently diagnosed with stage 4 Endo

I have just had a Diagnostic Laproscopy and Hysteroscopy with Biopsy 4 days ago and have been told by consultant gynie that I have severe endo which has attached itself to a number of my reproductive organs, bladder and bowel. I also had a over 8cm endometrioma (chocolate Cyst) drained as he couldn't remove it as the endo was around it he had to cut some away in order to drain it. He also told me that the endo had matted and compacted. I also have 3 further endo cysts but not as large 4cm and 2cm and also a largish fibroid none of them removed. He has mentioned that because the endo is so severe that a Hysterectomy with 5cm cut along the bikini line and removal of everything apart from Cervix. I have suffered extreme painful and heavy periods with large clots for over 20 years. In 2003 I had a Diathermy of my right ovary and Laparoscopic dye test of fallopian tubes where they found a large amount of polycystic ovaries and was diagnosed with PCOS. I am 47 years old and am very very concerned about having a hysterectomy and the implications it can have, I do not have any children and do not plan having any. The worse time I get severe pelvic pain is just before my period is due, while on my period and about a week so pretty much all of the time. Has anyone had these problems and had a hysterectomy because of the severity. I'm scared about the likelihood of having one and he also mentioned ovary removal. HELP and Advice will be must appreciated I'm seeing him in a couple of weeks for post op consultation on the findings etc. He mentioned a possible hysterectomy in about 3-4 months

9 Replies

  • Hi darling, it a lot to take in I know, I've just been diagnosed with mild endo and servere adenomyosis, I'm waiting for a date for a hysterectomy, it's acure for adeno, which doc thinks it's that, that's causing my daily pain, ive got 3 children don't won't any more and I'm 39, he will be leaving my overies in due to my age and them being healthy, why are you so worried about the hysterectomy, is it because they will take overies so you will go straight into the menopause, at 47 you outdo go any tine any way,

    I think you would feel loads better after a hysterectomy, and if that's the best option to excise the endo, it might be your best option,

    I wish you all the luck in the world,


  • Thanks Tboag, wow you sound like you have been through it too. I am worried about the hysterectomy for a number of reasons, mostly bringing on the menopause early I may start the menopause in 4ish years any how. I haven't had the opportunity to fully discuss with him as yet as I only had the hysteroscopy and diagnostic laproscopy on Friday and only came out of hospital after lunch on Saturday. My consultant only popped in on his rounds for about 10 mins and spouted off really quickly as to what he found. I was in quite a bit of pain and very tired. I have to wait for a post op appointment so he will be able to tell me exactly what was found and what the next stages are. I don't want to make any wrong decisions. Just confused about the whole thing really and very scared.

  • When is your follow up, I no how you feel I was in shock about the adenomyosis, exspecially as it is servere, although it's nice to finally hear that there is a reason for all my pain, back in September they found a kidney stone while investigating this, and wouldn't do anything more until they had ruled that out, I ppast it successfully and still in pain,

    He will go through all your options with you, you will Defo pneed more surgery to remove as much as possible, are you seeing a specialist endo surgeon ??


  • I haven't got a follow up date as yet...I haven't seen or wasn't aware of an end specialist...I am under a gynie in Nottingham under Newark and Sherwood NHS at kings mill hospital...maybe I should see what he says and then depending on that get gp to refer me to endo that a endocrinologist?...

  • Hi - I am so sorry you have been given such a shock with this. I am assuming that you have been treated by a general obstetrician who holds with the obsolete view that a hysterectomy will cure your endo. But it won't. It will take away any that is on your uterus and ovaries but not the rest that is left behind and this can continue to grow after surgical menopause. It is absolutely vital that you are now referred to a specialist centre who are the only surgeons who should deal with your stage of endo. They have teams of skilled endo excision surgeons, colorectal and urology surgeons who work together and will aim to excise as much of your endo as they can with or without a hysterectomy depending how diseased the organs are. So your consideration is not whether or not to have a hysterectomy but getting appropriate treatment for your extensive endo as a whole and not that just on your reproductive organs. The guidelines that underpin NHS endo treatment confirm that rectovaginal endo must only be treated in centres of excellent and a general obstetrician shouldn't be making a decision as to your care, unless it is to refer you on to a specilaist centre.

    Please click on my username and read my posts on endo, especially pouch of douglas endo which you will have, and on post menopausal endo after hysterectomy. Then look at my post on how to find a specialist and be sure to look at all the links at the bottom as to your rights. You can get the referral through your GP or through this consultant and but be sure to take a copy of the BSGE list and I should also copy the section of the NICE/ESHRE guidelines that confirm that you must only be treated in a centre x

  • Hi again - your consultant specialises in gynaecological laparoscopy and deals with endo as part of general gynaecology. He is no doubt very skilled at what he does but this is very different from a dedicated endo specialist in a centre. I am under Newark and Sherwood and was in BUPA so could travel to the specialist of my choice in Yorkshire when my GP wanted to refer me to the QMC. The centres didn't exist then. My endo was stage 4 post menopausal after a hysterectomy and HRT following incomplete removal of a 13cm endometrioma a few years earlier by a general obstetrician. It is so important that you get the next part of your treatment right. x

  • Hi Lindle :) thankyou so very much for your response and direction to your posts, incredibly useful info. I have now got a post op date of 2nd June to see consultant gynie to discuss the findings in more detail as still not 100% sure what the hell is going on inside. I just want to say you are a miracle I would gladly pay for your services as a consultant to come with me to see doctors...consultants etc as you clearly know what endo is all about...reading all your info has helped no end. I looked at the BSGE site and there is a consultant in Sheffield which is 1hr away from where I live...I just need to see the report of findings and see my consultant and have the ammunition ready to put forward to him and GP as to a referral to get endo removed as so not happy right now with the possibility of a suggested hysterectomy. I wonder how long the endo has been building up? I had my right ovaries drilled and pieces cut out through keyhole laproscopy because of PCOS in 2003 and nothing on the report mentioned anything about endo then. I think I need to seriously sit down with GP or consultant and go through my medical be honest I am feeling so disheartened and also quite angry with everything right now...god I so hope their is light at the end of the tunnel. Once again Lindle thanks <3

  • Hello Lindle,

    Just been to see GP as I have an infection in my post op belly button that had white discharge and was smelly and itchy. While I was there she gave me a copy of the GP discharge summary letter from the consultant...this is what is read:

    Patient had diagnostic Lap and hysteroscopy as reffered by your surgery as patient was suffering from extreme pelvic and abdo pain and presenting heavy painful periods. I am aware from her notes that she had a transvaginal , abdo and pelvic ultrasound.

    I have done a hysteroscopy, laproscopy and drainage of endometrial cyst. Fibroids and grade 4/5 severe edometriosis visualised. Cyst could not be removed as attached to bowel, back of womb... well that is insufficient because I and my husband can categorically say that he mentioned so much more than that ie hysterectomy was in order etc.... I suppose I will have to wait to get some more info when I see him or one of his team (more likely one of his team) on 2nd June. I am sooooo angry and upset as that letter does not give any help what so ever on proper findings, even my GP was completely flummoxed and said she cannot get any help from that at all. Blinking marvelous...right spose I need to collate some questions to take with me and see what has to be said etc, not holding out much hope to be honest :(

  • Hi again - I'm so glad it helped.

    I'm afraid this will have been developing over many years and you must have reported your symptoms many times and no doubt had them brushed off or misdiagnosed.

    Don't rely on your GP to understand your history. Armed with the new knowledge you have I would strongly urge you to arrange a viewing of all your medical records as soon as you can to include all the old paper records. This is the only way you will get an insight into what has gone on and what has been written about you over the years. It can be jaw dropping! You need to get a sense of owning your medical history, which of course you do, but we have been conditioned over so many years to think that doctors own our bodies. Someone will sit and supervise you but take the time you need to write notes of the important significant events and items you want copies of. I have copies of every single item ever held on me both in the practice and any hospital I have ever been in going back to when I was born! It amounts to a pile about a foot thick!!

    I should phone the practice today if you can.

    Get back if you need any more help x

You may also like...