Finally diagnosed and treated 🤞🏻 - Endometriosis UK

Endometriosis UK
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Finally diagnosed and treated 🤞🏻

emmaquinny
emmaquinny

Yesterday I had my very long awaited laparoscopy, hysteroscopy and a cystoscopy. All went well in the sense that I’m not crazy and wasn’t imagining the pain, I do have endometriosis. It was abit of a mess in there, my ovary stuck to my bowel, my bowel stuck to my pelvis wall and a lot of scar tissue behind my belly button. Surgeon also excised another 9 endo sites across my pelvis, but had to leave some on my bladder which he said probably caused the bleeding from the bladder I had previously. I had another cystoscopy while under and bladder was clear inside at moment. My womb is also slightly prolapsed. I’m really rather sore today but not as bad as I expected I would be to be fair. I think it’s worse from getting out of bed every hour for a wee 🤦🏼‍♀️

I go for a follow up in three months when if there is no or not enough improvement I can try some more drugs/full hysterectomy. What a journey-thanks so much for all your support getting to this point 💛 any recovery tips greatly appreciated xxxx

6 Replies
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You poor lovely and congratulations and commiserations all at the same time! I'm in a similar boat, having had a laparoscopy and cystoscopy on Wednesday (after a battle and a half, went private) and had excision of endometriosis from right and left pelvic wall, right and left ureters, Pouch of Douglas and bowel. So, I've also not been crazy all this time and it certainly wasn't just IBS as the first gynae I saw very adamantly told me! Although I was almost convinced it was endo I also thought there was a real chance I'd wake up and they would say they didn't find anything. Almost in a state of shock and emotions very up and down, bordering on fury at times at the fob offs I've been given over the years. You sound to have copped it worse but I'm glad they caught it at this stage for us both. Where have you been treated? I've peaked and troughed on pain levels in the last few days, early mornings are worst when painkillers are nearly out of system, so keep topped up as much as you can and take the laxatives to counteract the painkillers. I'm drinking lots of peppermint tea and taking colpermin peppermint capsules as advised, I keep thinking surely the gas has cleared now and then it can hit quite hard. Really do rest up, but do walk about too, I was advised that was really important to avoid DVT and before I can take my stockings off. If you haven't already looked in to it EndoRevisited is a fantastic Facebook group run by someone who has and is doing loads of research and so much useful information on every step of the way. Take care, best of luck with recovery and message me anytime xx

Hey, thanks for your reply, I wish you weren’t suffering but hey, at least we are not alone! I too was tried to be fobbed off but the help and advice of people on here got me to where I needed to be. You’re right about the gas-it seems to move.. my stomach can seem to be normal then rock hard and painful and I can feel the gas move through my bowel, but it’s not really coming out. I’ve got my sexy stockings on! And anti-coagulation injections that my poor needle phobe husband is having to give me 🤦🏼‍♀️

I hope we are both feeling better soon xxx

Kirst625
Kirst625
in reply to emmaquinny

You're so right about not feeling alone, such a big help, and about this forum (and for me, EndoRevisited) getting us to where we needed to be. That's love for you, your dear husband bless him! I had one in the hospital but not sent home with any. My husband has been my rock too, I'm hardly lifting a finger bless him and he's created a spreadsheet to help us keep on top of the meds! Dressings come off today (I've felt quite secure with them on...) and once I've got up to a 20 minute walk in increments of 3 mins my sexy stockings can come off 😊 hope you have a restful and recuperative week xx

emmaquinny
emmaquinny
in reply to Kirst625

I was just told the stockings come off after 3 days and three nights, so that will be tonight. I think they said a week for dressings,hubby put some waterproof ones on for me so I could shower. I’ve woke up today in as much pain as I did from theatre almost 🤦🏼‍♀️ I’m thinking it could be the food moving through my bowel, or the fact I’m due to ovulate, I’ve also started to bleed again when that had about stopped-I thought I’d got off lightly 😆

Kirst625
Kirst625
in reply to emmaquinny

You poor lovely 😣 reminding myself by rereading what you've had done I'm not really surprised unfortunately that you're up and down - I am enough and keep getting surprised at the peaks and troughs. Please be kind to yourself. Think you're right about things moving through system, I was getting increased pain the day before yesterday and felt much better with some good old proper movement yesterday ( 😄 ) but it's starting to increase again now though. I'm sorry about the bleeding, I'd definitely get that checked I think if it was me to put my mind at rest. Tricky to have ovulation in the mix! Just realised that's me next too in 2 days time, eek. Out of interest did you have very painful clotting periods before and have they mentioned adenomyosis to you at all? I've realised that while hopefully all my bowel and IBS symptoms will be attended to with this op that I didn't really explore having a hysterectomy at the same time and am just trying to get my head around whether I will be left with my actual awful period symptoms and pain during ovulation. Do you know much about these aspects? Xx

Before I had the mirena in I had extremely heavy periods (lots of flooding) with relatively small clots, but lots. They checked me for adenomyosis and I was all clear-he said my uterus and tubes were in good shape. I’m not too sure about those aspects and what will happen next, but my understanding is the best course of action now that the endo sites have been excised and organ adhesions freed is to encourage it not to grow back with hormone use and hope for the best-my bleeding has stopped again so I hope that’s my new mirena bringing it under control.

I’ve felt very sick over the last couple of days, and I seem to have gas coming from my bladder when I urinate (it bubbles-there is no question over which hole 😂) over the last two which is absolutely bizarre. I’m going to ask the dr about it tomorrow-wondering if it was pushed in with cystoscopy, but it didn’t happen last time. I’m just changing my dressings and letting some air to them, they are not dried out yet and still look sore, but I wouldn’t say they hurt or look infected-how are yours shaping up x

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