Little update on me, as I've been posting the last few weeks/months.
I finally had my surgery on Tuesday with an Endometriosis Specialist in the Wirral privately. I was recommended to see Jim from a fellow endo warrior and friend.
It was the best decision I have ever made. After being fobbed off in the past and years gone by with no answers and consultants giving me false answers. I just knew I had to do my research and I came across a few UK Specialists and my friend recommended one one my list.
I had an MRI through my local hospital last Sept 2021 which indicated my bowel was clear. Even though I suffer with my bowel and I've lost so much weight. And I have Diarrhea/Constipation on and off. Nausea and vomiting. Rectal bleeding when on my period. The MRI said it was clear. I knew from research you can't always rely on an MRI and a laparoscopy is the best way to see Endometriosis. On the MRI is showed my left tube had Hydrosalpinx. Which my consultant at the local hospital said will need removing. So she put me down on the waiting list for 18month wait but told me my bowel was clear. So wouldn't even look at it. She told me I probably have an IBD which I know I don't have as I have had colonoscopys km the past etc I needed a second opinion and I'm glad I did.
Fast forward to Tuesdays surgery. The Endo specialist saved my left tube it wasn't Hydrosalpinx like it said in the MRI. I had an ovarian mass on my tube and my sigmoid was stuck to it and my tube was trapped. He managed to free it up and get all endo off using excision surgery. He put dye through my tube and it works perfectly 🥰 I was totally amazed when he told me as I was adamant I was going to be losing it. My ovary was covered in endometriosis and had a chocolate cyst on it which I wasn't aware of? Plus it was all stuck to the use and sigamoid. Again he freed it up and managed to save it. He also found Endometriosis on my diaphragm!! Which I was taken aback by! I know this is very rare and I was really upset on receiving the news as I couldn't believe how much it had spread. He excised all he found on my diaphragm. He found lots on bowel, intestines. They were all stuck together, lots on my rectum and pouch of douglas. It turned into a 3hr op, but I am glad I found this man. He promised me he would look everywhere he could and get rid of any Endometriosis and he did! I am due to see him for a follow up app at the end of May. Hoping to find out more about the op as I was high on drugs when he told me what he had found.
I am at home recovering, and feel relieved. It was alot of money but I had help from family and friends. It got to the point where family and and friends were concerned and could see how much I was suffering. I know the NHS has huge waiting times. And not everyone can go private. Advice I would give to anyone is, don't just put up with your local hospital or gynecologist. I have for years and they don't understand the disease enough. I've been left untreated, had Ablation (wrong surgery) and been left in a mess. Its your body at the end of the day and you know something isn't right. There is only you who can change that. Get a second or third opinion. I found my Specialist on Nancy's Nooks Endo Specialist list on FB. There are private specialists who will perform surgery on the NHS. You just have to initially pay for that first consultation app first.
If anyone has any questions I'm here
🎗💛
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Endo8701
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So glad you have a great results and happy healing now, and to celebrate a new life.
I feel the same, having been fobbed off years, I only said to a friend yesterday I can’t believe I’ve put up with so much pain for nearly 30 years and told it was normal so much times, then just given some many different painkillers, injections, coils.
I finally had one good female doctor that listened to me and know if the pain and the Affect on quality of life. She had suffered too. She sent me for scan and she a gynaecologist etc, 12 month later I had a Laparoscopy in October 2020 with a different gyna who was happy to tell me no nothing wrong all in your head!
Plus I sure you will not suffer now as they is nothing wrong, most like you find they’re pain with stop now.
Any it didn’t!
I still suffer very 2-3 weeks, passing out, vomiting and in Excruciating pain at the Peak of my period. Pain throughout the month and bleeding from my rectum, and pains back, legs and migraines.
So back to the doctors I go, different Doctor, saying well the results show they’re nothing wrong. But try this painkillers, one I try years ago 🙄 so I said that didn’t work.
Ok try a anti-inflammatory, so I took I new one, didn’t help. After a few more months I called the doctors again, different doctor said everything medications I’ve already had or go back on a pill and coil!
I said no thank you had them all, did help or made it worse.
His solution was to give me Oramorph as a trial in June 2021
So I took the morphine, still in pain, passing out and vomiting. But sometimes if I took it in time I could manage to work through the day, and fulfil basic life essentials.
But basically off my tits, so shouldn’t have been driving or working.
Sometimes it got me through the night.
Put really not a great way to life.
So I called the doctor’s again.
They were not helpful at all. ( nothing wrong with you)
So I saved some money and paid to see a private gynaecologist September 2021.
He said that he would be help me, so he said about switching off my ovaries and putting them to sleep as a trial but would take 3 months, It maybe work but if it doesn’t and the pains stop than the wrong is the ovaries.
So the Gynaecologist wrote to my GP asking if they would give my the injections on the NHS as I’m a single parent and low income.
The GP said No (too much red tape) and as I’ve got private I was no longer a NHS patience.
So I sold things at home and saved for the 3 injections which were £200 each.
After the first one nothing I had a period a few days afterwards, still passing out and in so much pain, then had the second injection and as due, but pelvic pain don’t come and no period..
Third injection and review which consultant came, feeling amazing, all period issues gone and no bowel problems.
The fluid and weight dropped of me, 1 and half stone.
Then trial was over, he wrote to GP again explain the results and would they please put me on the injections months until I was able to operate. As I couldn’t pay £200 per month and should go be to suffering.
Well it was a No again.
The gynaecologist had to put me back on his NHS list as I could not afford nearly £8000 for the operation.
So after the last injection in November which seen me through until February 2022
Well it was back to living in the hell hole of my life.
Had two periods in a month, time off work again.
Gained a stone already the fluid on my legs is unbearable so much back pain.
So called the doctors (different doctor)
He was very helpful and sympathetic, so he suggested he would write to the gynaecologist asking if it was okay for me to go on the injections while I was waiting for my operation. I did explain that I go on ecologist had already asked on previous occasions if the GP surgery would honour me the injections until I had surgery.
Anyway after a couple of weeks and another period from hell, I finally got the injections on the NHS at my doctors surgery given by the nurse. Who was lovely, she see you next month hope it works soon.
Another period 🤮👹☠️💩 which has now been the last. 🙏🏼🥳🥰
Two weeks later I had a call from a outside hospital saying we’ve had a cancellation for next Tuesday do you want it..?
YES! YES! PLEASE 🙏🏼
I’m so happy, surgery went well and they removed both ovaries and tubes, took away all the bad bits and yes still recovering, feeling so much better already. Should of had another period last weekend. Even though I’m uncomfortable and a bit sore, The relief of not being in that pain, screaming as if I’m going to give birth to another phantom baby ever again, or my son finding me passing out in my own vomit.
I went to see the nurse yesterday as she removed the stitches for me, as they were pulling and sore.
The nurse said Yippee they did it as soon as she seen me and said to rest up and you can soon enjoy your new life pain free.
I just wish I paid to see a private gynaecologist years ago, but I was told for so long that it’s normal and I have a low pain threshold.
Even though I gave birth to my son without any relief!
So if you have to sell, beg, borrow or steal
the money. Maybe not steal.
It’s wrong that’s it takes a private gynaecologist to help, when most of them work for the NHS anyway.
I think I question it even more now, why are we left to suffer and for so long, I feel more emotional now because I’m lots so much of my life, relationship and friendship.
But I’m going to make sure I’m fighting fit to live the rest of it.
We need to keep fighting, we know our own bodies and no one person should be suffering like we do.
Thanks for sharing this, I think I need to make a decision have been holding off on a private consultation for years because of the cost but now I feel it’s a necessity, especially after reading your post. I hope your symptoms have eased and that you’re feeling a lot better than before
Hey sorry on late reply, I seen Mr P Scott in Plymouth, Devon. First consultation charge was about £200 -£250 my injection were £200 each , if I payed for operation £7800 privately. But he pull me back on his NHS lists, unluckily I had a cancellation appointment so I got surgery after 6 months.
The injections were to put my ovaries to sleep and put me into menopause state. The injections were Decapepty/® SR 3 mg which can be given by doctors surgery, but my GP wasn’t having it so I paid for 3 as I was a 3 month trial, I was finally given a NHS one a month before surgery, as I after the injections what off I was back to square one, with pain, finally a GP said I could have it, as it’s stopped the period which stopped the pain and what are the other problems that come with it.
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