Hi everyone i am new to the group and have been suffering with stage 4 endometriosis for over 4 years now. Thepugh all this i also suffer from anxiety and depression. I have currently just come home from being admitted to hospital due to the pain experienced through my endometriosis as possible cyst rupture. I am so fed up of it all i am 3r years old and have a 14 year old. My husband is sterile so no more children for us. I have spoke with consultant and said i am happy for hysterectomy as that will be the end solution anyway due to severity of the endo! I feel like i am banging my head against the wall as if nobody wants to listen to me. My mental health is not good at the moment due to all this. I have been having the prostap injection for 6 months now i am due another 1 next month and i really dont want it as the only relief i am given is not bleeding.
Just hope you all can relate and possibly help me through this dark point.
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Chezza2303
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My heart goes out to you! I would like to give you a big hug and say it will be alright!
I went through what you are experiencing, and I had first one ovary removed because of cyst, then I went in and had the full hysterectomy, I still remeber to this day the OBGYN saying wow you were so full of endo I never saw such a mess that was about 10 years ago, life is better I have trouble with the depression still but it is better
Hi oldladybeyond i have been seen by my consultant and thats it. It took me 3 years for my GP to listen that something wasnt right.!!
I just want it all over and done with quality of life is poor and for that i cannot thank the healthcare for a they shouldn't be leaving me in such a state. X
Hi christin_a i have had no other support apart from my consultant i have nobody to turn too in regards to my endo it has been a suffer in silence situation x
Sounds like you arent being seen by a BSGE centre if the consultant is the only person you can contact? You need to tell your consultant to refer you as per the NHS guidelines for treatment of endo.
You can Google the bsge website and check where you local centers are and what gynecologists are part of the endo team.
They are basically a specialist centre for endometriosis in the UK. So they have along with a specialist gynecologist, bowel specialist, specialist nurses, and I think pain clinics. And for stage 4 under NHS guidelines you have to be seen by them. As they have the most experience but also means if your bowel is effected they have a surgeon who they are used to working along side, and who is used to dealing with Endometriosis on the bowel and therefore how best to remove it etc.
You can Google bsge and their website will come up and you can find out where your nearest ones are. Depending on where you are your gp or gynecologist can refer you. If I remember correctly in Scotland it has to by your gynecologist but everywhere else I think your gp can do this referral.
Thank u I have looked for best area while none immediately I area there are a few between 30 mins to 1 hour away. What does stage 4 mean.. I have no idea what I am. The consultant told me nothing
So staging is a way of essentially saying how much endometriosis there is, and how complex surgically it is to remove it. 1/minimal is a couple of spots which are superficial (think of it like a plant with barely any roots in the soil, the soil being whatever its growing on)
2/mild is a handful of spots. With roots a little deeper
3/moderate is more and deep roots, sometimes this can involve also having a cyst of an ovary known as an endometria.
Stage 4/severe is alot (highest stage). Deep roots usually accompanied by a large cyst or two, and adhesions (these are essentially bits that can stick two parts together that shouldn't be attached, for example ovaries connecting with the bowel).
Did they tell you where the found it for example if it was found in the pouch of Douglas this is likely stage 3 or 4 as this is an indicator.
But its also good to know that the stage you are doesn't necessarily correspond to the pain you have. So you could have stage 1 or 2 but have severe pain. And likewise have stage 3 or 4 and not have much pain.
Initially I went to gp as period was every 3 weeks and heavier. Also a lot of pain on right side. Sent for scan and told day after I had cyst on ovary and a fibroid in womb. Back for 2nd scan 6 weeks later while waiting on referral. At referral it was we need lap to see what's going on indie do u agree I said yes. Organised a date and went in last monday. When i can out surgeon popped in and i quote you have endometriosis and i have repaired it. He then went to leave. I question... cyst fibroid??? His answer was fibroids not massive and again walked out after giving me photos. No explanation. After op care or advice. Joining this group has been a god send
Sorry to hear your aftercare sucked. Did you get a discharge letter when you left hospital at all? If not call you gp as they should have been sent a copy and it should have details of what was found where etc.
Or contact PALs at the hospital you had the surgery and do 2 things. Write a complaint about your experience to them. Also ask for informing on how to get your medical records, as this will have information as to what was found where during surgery how it was removed etc.
Thank you. The discharge letter had very little detail on it. I have booked an appointment with my gp next friday to discuss. Hopefully that should be enough time to receive data from hospital as it be almost3 weeks
Connect to Nancy’s Nook on Facebook. Incredible source of up to date education. A hysterectomy will NOT cure endo. You need to find the right doctor. Needs to be able to do excision surgery of the endo. Read, read, read and educate yourself. I had a full hysterectomy 3 years ago. I’ve had 2.5 great, pain free years .... now it’s back
Big hugs you I was in exact position 2 years ago and felt my life was crumbling around me. I’m have a 8 year old and was told I could only have IVF if I wanted another following a ruptured ectopic. We were unable to go for that and I begged for a hysterectomy. He made me try zoladex for 6 months to see how I would be in menopause (post surgery) it really started about 5/6 months and he finally agreed to a hysterectomy. It’s due to be done 2/9/19 after a year waiting. They stopped my zoladex 3 months ago and wow the pain has rushed back full force. Last night I was out with friends & I was having shooting pains up my front passage 😤
Keep pushing as we’ve got nothing to loose - it can’t get any worse! 🤞🏻🤞🏻
Hi, prostap was hell for me and didn't help my pain at all, also look into the length of time you've been on it and dosage etc, in America it's called lupron. I'm British too and also have stage 4 😭 it's hell. However please make sure you have researched the heck out of a hysterectomy! I was pushing for one since I was a teenager before I was even diagnosed! However a hysterectomy won't help me at all, it likely won't help you either, mine is stage 4 because of it's placement and severity. It's on my recto vaginal area (I think) the problem is that most endometriosis is outside of the womb, so a hysterectomy will not help at all, many women still have the same pain and symptoms after a hysterectomy, but then they are risk of complications, dealing with post op issues etc.
I would strongly recommend you research heavily into lupron/ prostap time and dosage (if it helps then that is great, but be safe) and into hysterectomy for endometriosis and where your issues are and if a hysterectomy would help.
You need to have an MRI scan to rule out if you have any cysts, where your endometriosis is and what stage it is. Then you need to see if you need surgery or make them put you on the zoladex gnRH injections. Having them injections WILL change your life.almost Anyone with endometriosis. It stops you bleeding but you get no pains it puts you through the fake menopause and you can have them for 6-8 months but I’m having mine for 5 years
Hi hollymaria, i have been on the prostap injection since january this year 11.25mcg i am sure i have. The only relief i have is not bleeding wveryrhing else is there my lower half of body feels like i have been run over constant aches n shooting pains all down my pelvic area down my legs to go as far as my ankles. All i do is take constant painkillers which i have for 4 years!! I have had No MRI or been referred to a endo specialist. My endo must be so bad as my consultant took photos at my laparoscopy back in January and uses my photos to show students. My head is banging against a wall and nobody will listen or help.
I also suffer from depression and anxiety. Endo does not help this issue. I had hysterectomy at age: 28, but my ovaries were left. I also have rectal bleeding, even though I am now 63. Hence, I have suffered since I started my periods. I do have 2 children, but my issue got worse after having my 2nd child. You need to keep on at your GP and Consultant. Stress to them how you feel as this issue will go on all your life which is unfair. I also have an ulcer in my bowel, which does not help the problem of rectal bleeding. Life is very unfair.
I have stage 4. Been under BSGE for over 4 years. Had excision. Zoladex. Nothing worked, except taking the pill continuously. No break, nothing. Life saver. No nasty side effects that you get with Prostrap/zoladex, no bleeding, and my cysts have regressed. Give it ago. Cant hurt! *PS had multi-team surgery and remained under 3 months consultation for 3 years. Haclve stage 4 deep infiltrating *subcategory aggressive* Endometriosis, everywhere. I was a mess for years and although not better, im a million times in a better place on the pill!
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that was about 10 years ago, life is better I have trouble with the depression still but it is better
x
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