Hi all, posting for the first time just for a bit of support and to see if someone has been in a similar position.
I have been going back and forth to the GP since 2016 with pelvic pain, tiredness and extreme bloating. I was told I had Ibs , however the pain was always in my pelvic area, heavy periods, extreme pain going to the toilet etc. I kept going back and 6-7 “clear” ultrasounds later was told there was nothing wrong.
In October 2021 I came off the mini pill and all my symptoms got much worse. I was finally referred to the NHS gyny in October 22 with a 6-12 month wait.
I got pregnant in May 2023 and had an extremely painfully miscarriage, admitted to hospital and was finally escalated to the NHS gyny who physically examined me and said she couldn’t feel any endo. !! ( is that even a thing?!) I was told I would need keyhole surgery to confirm if I even had endo.
I wasn’t confident with this particular Dr and paid private to have a second opinion. I was sent for an MRI and have been diagnosed with severe endo in the bowel, rectum, womb, vagina and an also have an ovarian cyst. I have been told i will need a full op and potentially a stoma bag due to the amount of endo on my bowel. It will be about a 6 month wait on the NHS and am being referred to a specialist team in Swansea Wales.
I wondered if anyone has had a similar experience? If they have had to have a full op rather than keyhole? And if you had to have a stoma bag following the op.
Thank you Zoe
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Zb92
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Oh Zoe, you poor thing. You have been through so much. I waited 6 months for a hysterectomy after 2 years of extremely difficult periods. I have fibroids. I was diagnosed with IBS when I was 28 and I'm now 50. My periods were always terrible growing up and sex was very painful which made me very depressed. When they went in to do the hysterectomy they found advanced endometriosis which has fully fused my cervix to my bowel and left ovary. They had to stop the operation and now I'm on Provera like you. It's working at the moment and it's the first time in 2 years that I've stopped flooding. They won't operate on me as it's too severe. I'm presuming the stoma bag will be temporary. With me, they said it coukd be for life. Good luck with it all. It's a real shock and waiting is awful but you'll get through it. Sending love x
Hi Zoe, bless your heart. You really have been through it! This group is great for the support.
I am not in a similar situation, I have all your symptoms though but I am still awaiting a diagnosis, I have my first lap end of October.
When came off birth control to that’s when I realised how bad my symptoms were!!!
I to have been dismissed by the NHS for years!! To the point I’ve had to go private. It’s so frustrating!
But I just wanted to comment saying good luck with it all and if you need someone to chat to feel free to DM me! You will get plenty of support in this group ❤️ and I would say make sure you chat with plenty of women in here, honestly it makes you feel so much better knowing you’re not alone xxx
Hi Zoe, this does sound terrible and the mention of a stoma bag must be scary.
I am replying because I recently, two weeks ago, had excision surgery on my bowel, pouch of Douglas, bladder, uterus and removal of an endometrioma. I had the right ovary and tube removed due to the cyst and the fact is was fused to the back of the uterus. I had had many previous operations for endo but had only ever had it ablated away. However, I changed my specialist from a general gynaecologist to an endo specialist. The first thing he did was an MRI. I was fortunate to have my surgery keyhole but reading your post it does sound like your bowel is in a lot worse state than mine and probably why open surgery has been suggested. Obviously my surgery is not as extensive as yours will be but it’s similar so I just wanted to say I’m fine and up and about whilst still taking pain killers. I would however find out their intentions of the stoma bag and how long you will need it for as quite often they are reversible. Also make sure you are having the best specialists to do this after all you only get one body. I’m sure you’re desperate to get it done but please make sure everyone that's in the operating room knows their specialist area well then you can focus on recovery.
I am very happy with the current specialist and his knowledge just frustrated it has taken this long to get some answers. Hopefully won’t have to wait too long for the operation and it will benefit me in some way.
Yes the bag is a possibility and hopefully will be for a short period. Thank you x
typically speaking when they do a stoma it’s to give the bowel time to heal after resection and removal of the endo. So normally they get you back in and reconnect it all after around 6 months. It’s something my surgeon mentioned as it’s a possibility I may need further surgery on my bowel. I hope you find some relief soon xx
It may also be worthwhile discussing surgery with a bsge specialist if you haven’t already. It’s very unusual for them to do open surgery for endo these days. Usually straight stick lap or davinci xi lap is done. Maybe ask why they are wanting to go straight into open surgery as your recovery time will be far longer and open surgery also causes more areas of scar tissue which I believe is bad when you have endo. Good luck hun xx
I have had surgery for this sort of endo - I'm not quite sure what you mean by 'full op' though - could you expand on this? Do you mean open surgery rather than keyhole?
I had 4 main lesions - rectum, left ureter, right uterosacral ligament, and right adnexae. Kissing ovaries (ovaries stuck to back of uterus), hydrosalpinx in fallopian tubes, adenomyosis, obliterated pouch of douglas. It was also on my bladder. My bowel and uterus were stuck together and pulled over into my right hip by adhesions.
I was warned of the risk of stoma but you may not need one. Most women don't. I didn't during that surgery. The surgery was keyhole and my understanding is that most endo surgeries are, even for severe disease, if you've got an endo specialist. They have to talk about it but it's worst case scenario so don't panic about it yet.
Hi thank you for this. It has certainly settled a bit of panic which had set in. I think as I had a telephone call, it was a lot of information to take it at once and got a bit overwhelmed. I am trying to replay exactly what was said re the op and hoping I have got I wrong and it is keyhole. (Which could be as I was scribbling down everything that we said down!)
It is really overwhelming - I was diagnosed after years of pain and illness and literally went from being told (by a GP) that I didn't have endo because I didn't have the symptoms (I had actually asked outright - could my horrendous periods and IBS be endo and he said no without even pausing for breath) to not only finding out that I had it, but that I was going to have to have major surgery. So you're dealing first with the shock of the diagnosis and trying to come to terms with that, and then facing major surgery, which is really scary, and trying to make decisions while you're ill and in pain and anxious and exhausted. It's a lot for anyone to deal with and I think confusion and uncertainty is natural. Plus a lot of doctors are incredibly bad at explaining themselves and checking that patients have understood.
Sorry to jump on this. Your bowel being pulled to the right hip sounds similar to mine. Was it your sigmiod colon which is on the left side being pulled to the right? This is what was mentioned on my mri scan that the sigmiod colon (left side) attaching to the right side of via a fibrotic adhesion
Btw 'full op' is sometimes used as a euphemism for hysterectomy so it is definitely worth contacting the specialist and asking for clarification.
Hi, I’ve had several surgeries to remove adhesions all with keyhole over the past 25years. The last one over 3 years also was huge which included recto- vaginal and bowel resection. I was told I could wake up with a stoma bag but luckily this time I did not. I will likely have a hysterectomy on next op but waiting to see if Dienogest progesterone pill helps calm it down. It’s is attached to my bowel once again- results from MRI confirmed it’s progression in 3 years. The MRI is the best way to check on your endo currently. Back when I was 19 when diagnosed the only way to see it was by going through keyhole surgery! 5 years ago I was amazed to see that you could see the endo from an internal scan, if the specialist knows what they’re doing, but no you can’t tell ever by touching the tummy!!
Hi I've recently had diagnostic laproscopy after years and years of heavy painful periods. I've had numerous ultrasound scans since the age of 15....im now 31....absolutely nothing wrong they said. Then I finally had a little break through December 2020 after yet an ultrasound, as I have been trying to conceive my 2nd child for 7 years now.... I was told i have PCOS. Ok so at least I know I'm not crazy....but still exactly the same but even worser as I started to get violent direah before, during and after my periods.... then was told over the phone in march 2021 that I have IBS. Still getting worse at this point. May 2021 was told to go on the pill again, the docter knowing for well I won't want to do that as I've been trying to conceive. So I kind of gave up and put up with the pain until December 2020 again. Was referred for another scan and a stool sample was sent off. Scan came bk fine apart from the already diagnosed PCOS. Stool was fine to..... so I finally got referred to a gynecologist after so many years.... had to wait until September 2022-9 months just to see 1. Go to my gyno appointment and have a pelvic exam all good.... she then says what do you think u have. At this point I am actually fuming. I say I've done some research and I think I have endometriosis. She point blank says I would be very suprised if you have that everything is OKfrom what she feels. I said but, I am in pain for a reason. They make u feel like a hydropondriac. So she reluctantly puts me on the list for a diagnostic laproscopy.... says its 3-6 months wait..... 1 year later I have it done september 2023. 3 weeks and a day ago. I wake up to 3 cuts in my abdomen. My gyno that said she don't think I have endometriosis comes to see me 30 mins after my surgery that took almost 3 hours. You HAVE endometriosis. I did what I could but you will need to see a speashilaist. Also we found a nodule that's been taken to be looked at. I'm still waiting or results. Literally all she said. I was glad I'd finally got an answer for my pain but then the reality set it.... how bad, what stage and so on.... I am still in limbo until I see the speashialist. I did get a letter saying it couldn't all be removed and that I had big spots of it in my pouch of douglas. It was also on both sides of my uterosacral ligament... and I actually had 3 nodules not 1. So they took the 1 that looked abnormal for teating and treated the other 2. Now it's just a waiting game. Since my surgery nothing pain wise has changed, actually I feel worser. Right now, writing this.... I have a hot water bottle on my belly, feel sick, excruciating back pain and I've had direah. Honestly I just feel so frustrated that I went through all that for nothing basically. I'm now thinking what next so do i have to have something else done.... sorry for the essay but like u I have soany questions and no one knows what I'm going through emotionally.
Whilst I can't help directly with your results, I can tell you I have endo and adenymyosis and its taken me years to finally start to feel better. I had all the typical symptoms, fatigue, bloating, pain, weight gain, painful sex, IBS.
I had the Mirena coil fitted which has been incredible - i really recommend it even though its not natural hormones, it helps endo sufferers quality of life SO much. Also, i had a DUTCH test and gut micriobme test and have been working with a naturopath who specialises in female hormones to heal my body. She has been amazing! Changed my life, I had excess oestrogen from the endo and I also had gut overgrowth. They think there is a link between gut health and endo growth. Look into the holistic route if you can afford to pay for it, i truly feel like myself again so want to spread the word. This was my lady: bridgetbnaturopathy.com/
Diet is everything for endo - you have to avoid inflammatory foods like wheat, gluten, dairy, sugar, alcohol. You will start to feel better!
hi Zoe.. I had surgery 3 weeks ago for stage 4 endo, the surgery was carried out by endo specialists and colorectal teams. I had severe endo on my rectum and bowel and had to have 6cm removed from this area, along with a whole load of other work, it was a long surgery. The surgery was both keyhole and mini open (I have a small scar from my belly button down, but it looks like it’s healing well) I have a temporary stoma on my right side to allow the left bowel/rectum to heal properly. The thought of the stoma before surgery was really terrifying for me but honestly I am managing it a lot better than I thought I would have. Just know, they won’t give you a stoma unless it’s absolutely necessary and the chances are it will be temporary. I was in hospital for 1 week after surgery, I really wanted home after a couple of days but in hindsight now I’m feeling better I needed to be there.
A 6 month wait for surgery isn’t long at all, I was 2.5 year wait at my endo centre, it took me even longer to get to that point!
I hope your surgery goes well. Any questions at all please just ask 💗
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