Operation date: 8/10/18 😱: So I am looking... - Endometriosis UK

Endometriosis UK

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Operation date: 8/10/18 😱

milly89 profile image
5 Replies

So I am looking to get some general advice and support from those who are or may have been in a similar boat to me as my op date is looming ever closer now and I am tormenting myself with all the what if’s and maybes.

Long story short, I’m 29 and would guess I’ve had endometriosis for most of my adult life, though only confirmed as stage 3 just before Christmas last year. After 10 long months from initial referral my date is scheduled for Monday

and I am absolutely cacking myself now. This to the surprise of every professional I’ve seen is my first laparoscopy having been brushed aside by my old GP for years when the symptoms were obvious enough even I could diagnose I had it.

I’m very lucky from what I can gather and my op is being completed by what seem to be two endo consultants who have been nothing but approachable and informative, however my op seems to have several possible scenarios.

My MRI suggests visually there is little to be seen of my left tube/ ovary, right tube looks damaged and ovary peppered with cysts. I also have a colon essentially stuck to my uterus and cysts in my bladder. I was initially told it was likely I would lose everything, but was told last week that they will endeavour to preserve as much as possible during the operation but having already mentally prepared myself to wake infertile, I now have a shred of hope. But don’t know if this is a false sense of security.

I’ve been fortunate and have been on zoladex/ hrt for 9 months and reacted so well. I’ve lost all my bloat and about a stone and a half to boot. It has given me a new lease of life and I’ve felt just amazing. I haven’t needed anything stronger than paracetamol for the odd headache since March which is just amazing considering I was regularly drugged up on all sorts!

I’m marked up for my ‘just incase’ colostomy and illeostomy which is naturally giving me nightmares, but would love to know if anyone had success and had tubes etc saved?!

M x

5 Replies
Galwambu profile image

Hi Milly, I didn't want to read and just move on.I don't have any advise to give unfortunately.Last year I had an MRI that came out normal except for hemorrhagic cyst that they told me was normal.Recently had a HSG Test that showed my fallopian tubes are blocked with possible adhesions.I have been trying to conceive for the last 10months unsuccessfully.I haven't gotten a diagnostic laparoscopy,my doctor said since am trying to conceive I should go ahead with IVF.I tried Serrapeptase and I had major side effects so had to stop.Am trying some other herbal stuff,then if by next year won't have conceived,I proceed with IVF which I have to pay for privately.Unfortunately in my country,there is no NHS and no insurance covers it.Best of luck with your Lap.Please update me on your progress

Janae15 profile image

Hi Milly, sorry to here you are having a bad time at the moment. Please do not accept that you might have to lose everything. When I was first diagnosed with Endo I did have an opherectomy, I had my right ovary and tube removed. My surgeon was able to save my left ovary, even though it had a 9x6 choc cyst and was attached to the back of my womb. I have since had two more ops to remove lesions/ adhesions and choc cyst from my left ovary. Unfortunately on the last op he was unable to remove the cyst and chose to drain it as it is now attached to my bowel, also my tube is damaged. He advised to leave well alone as it would mean major surgery. I have a scan on the 14 th Oct, I am hoping that it hasn’t filled up again 🤞🏻

I would make it clear to them that you want children in the future. All the best x

milly89 profile image
milly89 in reply to Janae15

Yeah I have, my entire body is covered, but this is obviously my first lap. Just horrible not knowing what I’ll be waking up with or without! Such torture. I’ve been told I can have a hysterectomy after this and I know either way as I’ve responded well to zoladex. X

AllthatGlitters profile image

I hope it goes well, I totally get your fear as I am also scared although I don’t have a date as yet. It’s the worry of what they will find and do during the surgery. We have to put our faith in the wonderful NHS surgeons and I am sure it will go well x

Macca13 profile image

Good luck to you for your op. I don’t have any experience of this before but just didn’t want to

read and not wish you luck xx

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