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Endometriosis UK
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I finally have been able to document my full story it's far from the final edit and as I C&P from another forum I have fixed some errors

Aged 17 I lost twins, I had my 12 week scan on the thursday and found out that I had miscarried, at this scan they said 1 baby, it was Easter weekend so I waited until the Tuesday and went in for a D&C. It was after the procedure that things took a turn for the worst, I went home the next day I had keytones in my urine, so 3 days after the procedure I collapsed in the middle of the night, I lost so much blood I almost died in the Living room. My auntie who I’d managed to phone came 9 miles at 4am and found me curled up in a ball fitting and bleeding profusely. I don’t know how she managed it she picked me up and carried me to the car and took me to hospital. They admitted me and started a transfusion as I was on my way into emergency theatre. During this operation they found a 2nd baby dangling from my right fallopian tube and a tear that they’d put into my womb during the D&C. They snipped the baby free and sewed up the hole meaning very slight damage to the tube ends, they said it should be fine. I got an infection and was in hospital for 2 and a half weeks. It was while all of this was happening that my then bf was cheating with my then best friend. I fell into a deep depression and had no idea what he was doing I just knew he hadn’t been with me during either of the procedures, I’d had the D&C alone with nobody there to hold my hand before OR after. Then a few weeks into my recovery I started to feel a bit more like me and that was when I discovered the true extent of their betrayal…it’s safe to say they both were cut out of my life and I started to move on.

Aged 19 I met Peter, we tried for a baby right from that first weekend we spent together, it was just right, I knew he was the one and I knew he would be the father of my children. When people ask how do/did you know and I always say the same thing, when you find THE ONE you know instinctively. So anyway we TRIED for a while and after a few years it became kind of stale and we stopped TRYING and just let nature take its course, we both agreed if it was gonna happen it would so we enjoyed being together and an active physical relationship but it never did happen naturally…

Aged 24 I woke up during the night and had the worst pain I’ve ever had, my bum felt like I’d sat on a burning dagger that had gone 5/6 inches into my rectum and began to tear my bowel apart. I was sweating profusely and I literally couldn’t move for pain in my tummy. Bare in mind it was 3am and everybody was sleeping, I manage to drag myself out of bed and made it to the loo. I sit there literally bawling my eyes out crying struggling to comprehend what was happening to me. I remember I leaned back on the loo, tilted my head back to feel the breeze and the next thing I knew Peter was carrying me from the bathroom back to bed, he said I’d fainted. The pain was so excruciating I don’t recall very much at all. The next day my period started and I rang my GP who wouldn’t come to my home to see me and I couldn’t make it there so she did a telephone consultation with me and told me I have an infection. For months after that every month I was getting antibiotics for this mysterious infection, she said water infection I disagreed, she said thrush I again disagreed, she had no intention of finding the real true cause of my pain so I started the long line of new GP’s. They all in one way or another decided I had infection and I was pi$$ed at this point and stopped going to ask for help. Anyway things calmed down and became manageable so I coped, and for the longest time I never had anything even similar to this episode.

Aged 27 I was shopping with Peter at out local supermarket and I started to sweat profusely again accompanied by abdominal pain, again this was the start of my period, I managed to make it home and this pain was very different I only ever felt this pain when I lost my babies, I did a test and I’d been pregnant and now I was miscarrying again. This was the first in a long line of early loses that I managed at home, they went unrecorded and my mood began to plummet more with each passing day…

Aged 30 I found out I was pregnant on Peter’s birthday, it was AMAZING! All I’ve ever wanted was to be a Mummy and it couldn’t have happened at a better time…Then I was assessed as high risk of miscarriage and the hospital wanted to see me ASAP. At 3 weeks gone I had my first scan and they found cysts, loads of cysts! They said it’s fine they aren’t a problem at this point but we’ll be monitoring you closely, I had a scan every week from then and at 6 weeks and 3 days I was on my way to the hospital for another scan, my friend was meeting me there as Peter had to work so i was on the bus alone.

This is where things took an unforeseen turn for the worst. The bus crashed and although I was unhurt I was taken to hospital by ambulance as a precautionary measure since I was on my way there anyway. I go in and they’ve not got space for me to have the scan at this point since I missed the actual time slot so a Dr sees me and says whiplash it was recorded at that point in my file they’d identified whiplash and back pain. They arranged for me to go back 10 days later for another scan.

I started to spot slightly 2 days before the scan and I’m panicking really badly but they still couldn’t fit me in so I had to wait. It killed me waiting because at this point I already knew I’d lost our precious little baby. I go in on the Friday and they start the internal scan and confirm I have in deed miscarried again.

I don’t remember anything really except I know I broke down and cried a thousand tears. My friend again was with me, I didn’t want Peter there I’ve done this before and I knew it would have broken him so Deb came with me and she told him. He came straight to the hospital from work and his face just broke my heart, he was hurting so badly and I felt like it was my fault…

So on the Monday I went in and had another D&C. This was loss 15 after I’d sat down and counted…

Anyway back to the cysts, apparently they knew from the first scan I was suspected of having Endometriosis and said nothing. At the point where I’d had my last scan the cysts were 18cmx10cm Endometrioma attached to my spine, 10cmx8cm Endometriomas encasing each ovary and tube, I also had 3 that were 5cmx3cm Endometriomas that were attached to my cervix and others that came and went during my short pregnancy. I say went they burst and that’s why I’d started to spot.

It wasn’t until 6 weeks after the D&C I had another scan and they finally said you definitely have a condition, it’s called Endometriosis. I’d already been researching so I knew what that meant. I'd heard it a few times at my earlier scans and wanted to know what it was. I don’t recall my exact words but they weren’t pleasant…

They handed me to the General Gynae team and they were fantastic! I didn’t have a bad word to say about them. They made me feel like I was a priority, they were very open and honest and answered every question. The time came that they wanted to operate and I was unsure, I knew enough that they shouldn’t have been playing around inside me, they didn’t have the correct qualifications they hadn’t been BSGE so I was a bit put out, I let them railroad me into agreeing to the surgery as he promised me if they found anything inside me they would let it be and they would perform an investigative Lap instead of the proposed bilateral deroofing of the Endometriomas on my ovaries. They lied, HE lied and he tried to remove the cysts. They’d given me an MRI before the surgery and hadn’t disclosed the findings. The left one came away freely and the right one was far more complex and yet he’d still tried to remove it and failed. The right ovary was attached to my rectum they said and part of the cyst was still attached between the two.

After the operation I’d been out of surgery for an hour and a half and they’d given me morphine for the pain and they sent me home…I don’t remember any of it, I was in hospital then I was t home in bed I don’t recall anything in between.

At the post-op communication broke down severely and they didn’t relay any of the findings to me, I was told my right ovary is attached to my rectum, go away get pregnant and come back in a year if you fail. They’d discharged me!

That was October, in the January I’d decided I wasn’t happy, the first few weeks after the Lap I felt really well but then things got bad, worse than they’d ever been my pain was increased and I’d almost overdosed on pain relief, my GP was useless they didn’t and don’t understand. I had to argue for the referral to the Endo clinic, at that same appointment with my GP he said it’s all in your head…

I developed so many other problems as a direct result of Endo, I now have IBS, Vertigo, Acid Reflux, Stomach Ulcer, GERD, Migraines, Depression, Anxiety, insomnia, more recently I have started to develop a phobia of people, I don’t want ANYBODY to touch me I flinch at human contact. The list is endless!

I finally got to meet a BSGE specialist and as per usual I have plans I get a flare up, I was in so much pain, I literally dragged myself to the hospital I wasn’t gonna miss that appointment! My joints had seized and I was walking like the tin man before the oil… I walked in the room he said come in sit down you need a major operation, it’ll be very big and have a long recovery time and I just burst into tears. It wasn’t so much what he’d said but that I was finally believed! I had a really good honest open conversation with him and he explained the findings from the MRI and the Lap.

He said you have Endometriosis stage 4, its rectrovaginal meaning the Uterus is clear of disease however it is a breeding ground for Endometriomas. This poses a whole new set of problems for us, you will need 2 other surgeons in working on you at the same time as I am, a Urologist as it’s on and possibly in the bladder, you have full obliteration of the PoD and you have nodules in the rectal cavity as well as nodules in the uterus attached to the opposite side of the rectum. He explained that my right ovary is in fact attached flat surface to flat surface with the lowest of the nodules and they are breaking through the wall just an inch above the anus. Another problem will be a nodule that is in the rectal cavity it’s punctured the muscle wall and is almost through into the uterus. These 2 in particular pose a lot of difficulty when removing them. The disease has spread upwards into my organs and they can’t tell me any more yet without further tests etc.

I’m meeting the Colorectal surgeon on Monday and then I go back and see the BSGE Dr with the Urologist on 16th June. This is the start of a very long road and I’m not sure how I feel about it!

He also told me that the right ovary is beyond repair, he will attempt to free it by shaving it away but it’s unlikely and he’s 90% sure it’s coming out…

Nothing is set in stone yet, it’s a waiting game and I am scared! My emotions don’t usually get the better of me but in this instance I really don’t mind admitting I am cacking myself at the prospect of losing my ovaries. He said the left one is also in jeopardy as he can’t tell how badly damaged it actually is until he gets in there and looks for himself…

That’s my story so far. Rectrovaginal deep infiltrated Endometriosis stage 4. I honestly can’t tell you how that makes me feel all I know is I can’t live this life if things don’t change!

9 Replies

I am so so sorry to hear that you have had to go through all this. I can't even begin to imagine how scary the prospect of more surgery is, but hopefully it will finally give you the relief from all of these symptoms you have suffered with for so long. You are an incredibly brave and strong woman and I can only pray and hope you get the treatment you deserve. Sending you lots of love. Stay strong and keep fighting xxx


You have brought me to tears nearly by reading your story. I know how exhausting that must have been for you to type, mentally and physically. The most frustrating part is the not being believed and I'm sure so many on here sympathise with you there. You have been through so much and I really hope you have good support, please keep us posted I will be following your story as you really are an inspiration although you won't see it that way. Hugs and prayers and don't you dare give up, we are all rooting for you! X

1 like

Be brave. It sounds like you are finally getting somewhere. I wish you all the best for a pain free future. Good luck. You deserve it xxx


Bless u and I thought what I've been through was hard...😱 All the best...


I read your story and cannot believe what you have been through. I thought things were bad with me but that's something else. Can't imagine what any of this must of been like for you. Try and keep strong although it's hard. You've been so brave fighting on from such a young age. Wish you all the best and a pain free/care free future with your health!! Xxx


I read this and thought "what a woman"!

You are amazing.

Thank you for sharing your story.

I hope your surgery goes well. X


I want to send you a big virtual hug. I thought I'd been through a lot with Endo but my god you've had it tough.

I know it's incredibly hard but try to stay strong. It sounds like finally you're in the right hands. Obviously this would have been preferable years ago but hopefully, whatever the outcome, you're now going to receive the best treatment and support. Keep us posted! Lots of love xx


Thanks girls it means so much :) luv u all <3 I don't feel brave or strong I'm just little old me plodding along and muddling through. Feeling fairly anxious this morning off the hospital in a couple of hours I hate this waiting game xx


On chick, im abit gobsmacked that you're still here to be honest! If you've managed to stay relatively sane throughout all of that then you must be one tough little cookie. Reflect & give yourself the acknowledgment for putting up with so much. Do you have any other support Kelly? Thing about this disease is that it's so ease to become a recluse! Hope today went well? Judging by your history I'm guessing you must have a hell of a lot of good stuff coming your way soon. Big hugs xxx


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