Recently diagnosed with stage 4 Endo - Endometriosis UK

Endometriosis UK

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Recently diagnosed with stage 4 Endo

skt68
skt68

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

6 Replies
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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,

Xxx

skt68
skt68 in reply to Tboag

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.

Tboag
Tboag in reply to skt68

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 ??

Xx

skt68
skt68 in reply to Tboag

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 specialist...is that a endocrinologist?...

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 history...to 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 :(

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