Hi, I thought I would come on here and share my journey so far,
I have known for years that there was something wrong and of course you know your own body, I had countless tests and ultrasounds etc done and everything came back normal, I spoke to my nan and told her all of my symptoms to which she said that she experiences the exact same things and then spoke to me about how she got diagnosed after 14 years with endometriosis and she explained to me what this was, my nan had a full hysterectomy but was lucky to have 1 child before this.
Last year I got diagnosed with stage 3 endometriosis after years of pushing and pushing for appointments after appointments and after being told I was going crazy and it was all in my head multiple times from doctors and gynaecologists, I finally got an appointment for my surgery (laparoscopy keyhole surgery). They informed me I have stage 3 endometriosis and that's all that was said to me, all there was on the discharge papers was that they lasered it off my Pouch of Douglas and wasn't able to touch my ovaries without consent. Very vague and brief description which left me in the dark. I have had a few follow up appointments where I have asked questions which again have been very vague, and they decided to put me on the Mirena coil which did help with my bleeding but did not help with my pain at all.
I had to wait 6 months for my next follow up appointment to give the coil chance to be effective. I recently went to my appointment on the 30/11/22. I asked the gynaecologist to please explain to me what was actually going on. I was informed that my womb is stuck to my bowel and my left fallopian tube and ovary is also stuck together, I have waited almost a year to actually find out what was going on. I have now been referred to endometriosis clinic to talk about surgery which I'm not sure what surgery this would be, but the gynaecologists said it would consist of taking out the bowel then putting it back in? I have had a look online at different surgery procedures based on this info and from what i can see its quite major surgery and I'm quite worried. If you have had a surgery based on this, can you give me some information of what potential surgery I could be having, would really appreciate this.
I do have my next appointment at the endo clinic and im also waiting to have an MRI scan done to see how bad the endo is on my bowel. My appointment is next Thursday 22/12/22 to talk about the next steps and if require a next surgery and I really want to write down and ask questions as I always think of questions to ask when I leave. Please could you write some questions below which you think I would need to ask? or maybe questions that you have asked before? 😊
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courtneyhatts
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So sorry to hear that you have had an awful time getting the correct info after your op. Glad you have finally had some info. I haven't experienced this type of surgery but I'm sure other people might be able to help you. I have a question if you don't mind. Did you have to wait long to get appointment with a specialist? Asking as I will be referred to a specialist since the gynae surgeon didn't remove the endo during my lap surgery and worried that i will have to wait months to see a specialist 😫 I also will have to have a mri. They do this prior to plan the surgery
Hi, after I had my surgery in December last year I had a follow up appointment in February where they decided to put me on the coil for 6months then my next appointment was on the 30 november to which I told them the coil hadn’t been affective so this is when the gynaecologist explained about the next surgery. My next appointment to speak to a specialist is next Thursday 22-12 which was a lot quicker than I was expecting. I am still waiting for an MRI appointment, the letter I received didn’t state what the appointment was for so not sure if it is actually for the MRI scan or to speak to the specialist. I’m not sure which way round they would do this tbf. I think it’s more likely to be speaking to the specialists as I think they would state if it was an MRI scan. I think also depends where you live, I like in Peterborough and since I found out I had endo I’ve had all my appointments come through pretty fast.
Thank you for the detailed response. Wow that was quick to get an appointment. When you last saw your normal gynae 30th Nov was that when she reffered to specialist? Yeah I'm guessing the appointment is with specialist then you will have mri. Is the specialist at the same hospital you were under? The hospital I go to is guildford. Yes would be great if you could keep me updated x
you’re welcome, yes she referred me at my last appointment 30th November then got an appointment come through within a few days. I was expecting it to be at a different hospital but it isn’t, I’m still going to the same hospital and the same department as where I usually go, the only difference which is obvious is the name of the person I’m seeing as he will be specialised in endometriosis x
I go to Peterborough for my appointments. Had a hysterectomy last December and awaiting my next op. I’ve been told may/June for my next op. You may have the same consultant as me, if so he’s brilliant
Hi, I am so sorry to hear of your struggle with endo but I am glad it is now being addressed. I had suffered with endo since my 20s and had a full hysterectomy 5 years ago. However, I was 44 at the time and asked for this surgery, as I had already undergone several treatments and operations. My gynaecologist had informed me that my womb was also stuck to my bowel and there were cysts and many adhesions throughout my pelvic area. I had an MRI and luckily the endo hadn't penetrated through my bowel, so he was able to remove the adhesions during my surgery. I've had no bowel issues since. It has been great. I think issues arise if the endo has penetrated through the bowel. If this occurs the colorectal team are involved along with the gynaecologist. I was also informed before my MRI if this was the case then they would remove the affected part of the bowel, but it would heal and shouldn't cause any future bowel problems. I totally understand your fears, but I think invasive endo in the bowel is quite rare, but even so it can be fixed. Also, you are young, so I'd imagine you will be treated with diathermy, which will remove any adhesions while still preserving your reproductive organs.
Finally, my experience with endo wasn't pleasant by any stretch, but I had relief for long spells with treatment and I still managed to have children. I have my fingers crossed for you and wish you the very best of luck. Please let us know how you get on 🙏 x
Thank you so much for sharing this with me I really appreciate it. It's made me worry less that its quite rare for the endo to penetrate through which is reassuring. My gynaecologist briefly explained what the next surgery would include and when she informed me that the bowel would be taken out and put back in, everything she had said after that just went in one ear and out the other as this wasn't what I was expecting to be told. So, when I came out of my appointment, I was so worried and scared and did some research but couldn't find much, so glad I found this website as it's really hard to talk to friends and family who can't relate to this.
It's so reassuring that you have had children as this was also one of my main worries.
Thank you so much, and I will update you next Thursday 😊
I have just come across your post and it sounds quite similar to my situation and wanted to reach out for advice if you wouldn’t mind please? Thank you for sharing & I hope your endo pain has eased. I had my first lap Feb22 and the following the surgery was told my ovary was stuck to my bowel and they had managed to “unstick” it, but that I also have adenomyosis. I have had approx only 4 months with little pain ( out of 11 months since my first lap). I have tried the pill (advised to do so by my consultant) but it did not help. I have now opted for a hysterectomy (fortunately I have two children and feel my family is complete). I feel like the consultant is a bit reluctant to do the surgery as I am only 33 but has agreed and has arranged for the surgery end of Feb23. No mri / consultation has been arranged (as yet) and I am now worried that it could be the ovary and bowel stuck again rather than adeno pain but my bowel movement is normal, apologies to ask but did you have irregular bowel movement?
I’m sorry you’re going through this. I thought my experience may help you a little as this happened to me last year. I am older than you and had an total laparoscopic hysterectomy (left the ovaries) due to extensive endo, adenomyosis and fibroids. My colon was bound to the entire length of my uterus, which was 28cm instead of the normal 7cm, because of the adenomyosis and fibroids. My uterus was so heavy it had folded down over itself at the top, trapping my colon almost completely. This all happened over a 15-20 year period. I had lots of investigations in that time - was never diagnosed with endo (but absolutely knew I had it) and eventually lived with extreme IBS symptoms as a result of the colon thing, whilst never knowing about it our capacity for pain is pretty amazing, really.
I had a gynae and a colon surgeon in the surgery with me, and was told to expect to come out with a temporary catheter (approx 3 months) and a permanent colostomy bag, as the mri indicated it was invasive in many places along my colon and bladder, and would require removal of a section. But it wasn’t invasive and they managed to remove it all!
They told me it was 5mm from a point at which a permanent colostomy would have been needed so potentially that surgery a year later could have resulted in a very different life.
Endo surgery isn’t a one stop shop and I anticipate another round in maybe five years (have started to feel it coming back) but I’m hoping the menopause will massively slow it down/stop it altogether.
I hope my experience helps you. I imagine in order to laser/remove the endo they probably did have to pull bits of my bowel out of my body to see it, but I haven’t the faintest, and don’t want to think about it - ignorance under anaesthesia is bliss😊 They did an amazing job, and I’m so grateful to them.
I was like you, had no idea what to ask, but your gynae will guide you. She was showing me the MRI scan on the screen and I couldn’t make much of it so she drew me pictures and I completely understood. Still have them somewhere as a keepsake 😂. So it’s ok to say if you don’t understand, ask and ask again. Bring pen and paper and write stuff down as they talk. Its a lot of absorb and they can forget we don’t live in their world and they need to make the language clearer.
Thank you so much I really appreciate you sharing your experience with me. After finding this site and looking through everyone's journeys and questions so far, I've learnt more in a few days then I have in 3 years.
So sorry to hear this is what you went through this sounds awful! so glad they managed to remove all of this at the time of your surgery which gives me hope as I'm worried about the temporary catheter and a permanent colostomy bag. I have noticed on here that I've not yet seen anyone disclose they have had to go down this route which is so reassuring.
I've attended all my appointments on my own so far as most of them were based when covid rules applied so wasn't able to bring anyone, and I also used to get worried about asking questions and would always forget to but then would regret it every time I left my appointments . And you're so right it's so hard to understand all the terminology they use so I need to start asking if they can explain it in a simpler way.
Last month when I had my follow up appointment after getting the coil fitted, I did ask the gynaecologist if she could explain what was actually going on because I didn't understand what I have been told in the past and she was amazing, she got a 3D model and pointed to where everything was stuck together and explained everything in such a simple way which made so much sense. Stupidly I didn't actually realise how close everything was lol 🤣 x
Thank you courtneyhatts for such a valuable first post, it's raised an interesting conversation and thanks to Partiallythere , me94 , Michellek1972 so much more information at our finger tips. I feel the same everytime I log on, I learn so much, so quickly, every post I read resonates with me so quickly.
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Endometriosis sticking my womb and bowel together, need combined op! 
Bowel endometriosis and bowel resection 
Moderate to severe endometriosis attached to bowel
Bowel stuck to Uterus
