Day 3 following lap - diagnosis of endo and interstitial cystitis

[LouLouT]

Hi everyone,

Sorry for the long post.

I've had a bit of a rollercoaster ride since my first lap. I went in to anaphylactic shock after my surgery and have been quite poorly since. I've still got puffy sore eyes and a very sore scratchy throat but my rash has pretty much disappeared and I'm feeling much better today.

On Saturday my gyne showed me the video of my operation but I still feel like I have a lot of questions and don't fully understand what was done, I'll try my best to describe what I saw. My gyne removed approx 6 patches of endo, I think they were mainly near my pouch of douglas in the surrounding walls in my pelvis. He didn't tell me the proper name of where it was. He showed me my pouch of douglas and pointed to 3 dots that are endo and said they would need to be removed at a later date. He then showed me my ovaries and said my right ovary had been stuck to my bowel and was now unstuck, I also had a cyst on my right ovary that had ruptured. My gyne then told me I have severe endo on my bowel but as he does not specialise in this area he said he will refer me to a specialist for further investigations - he didn't show me this part of the video as he said he did not want to misinform me. He said I have a nodule? But didn't tell me where - I'm assuming on my bowel/ rectum. The next step is to be referred to a rectovaginal endo specialist and have a colonoscopy to see whether the endo has penetrated my bowel. I've had a mirena coil put in which we are hoping will help my symptoms in the meantime. My gyne said it's all about a quality of life and if nothing improves there are many treatments available we can try. I have been told I will need further surgery to remove the endo from my pouch of douglas and will need to make the decision whether to have surgery on my bowel. If I go ahead with surgery on my bowel my gyne advised I would need to have a colostomy bag fitted for 3-6 months and said I really need to think carefully before deciding. I didn't ask and I wasn't told whether my fertility is affected but I'm going to assume I'm ok and ask at my post op appointment.

I have a history of recurrent UTI's (started 11 years ago) which has become more painful over the last 4 months so my gyne also performed a cystoscopy where he discovered adhesions and cracks inside my bladder (no sign of endo though!). He has diagnosed me with interstitial cystitis and advised I will need to have treatment where they put a catheter in and fill the bladder with "medicine" which will help with the pain. I will need this done weekly for 6-8 weeks but again he needs to refer me to a specialist.

My gyne also suggested I join an endo forum - which of course I already have lol. He also spoke to me about support groups in my area and suggested I have CBT. I've already taken these steps but it was nice that he acknowledged the mental health side of endo and offered support.

I've lived with pain for most of my life (as I imagine you all have) but I always blamed myself for being ill. I thought everyone was going through what I was and thought i was weak and had a low pain thresh hold. This chipped away at my confidence and self esteem and even though it's been hard it's good to finally get some answers and to be taken seriously. I'm trying not to dwell on the past because it will fill my life with anger and resentment but instead focus on the present. Having CBT has been very important to me and I would recommend it to anyone struggling, whether it be before or after a diagnosis - it honestly does help.

Thank you everyone for your support and kind words, it's made the world of difference to me. You are all such amazing ladies, I feel so blessed to have your support and understanding.

I'll keep you updated with my progress.

Xxx

[ASP789]

Oh bless you. That's a lot to take in. I'm waiting for my 1st lap date and am scared x

[LouLouT in reply to ASP789]

It's ok to be scared, I was absolutely petrified. Don't underestimate how brave you are going through all of this. Not just the surgery but each and everyday, it takes a great deal of strength to go through all of this. Even though it was a lot to take in it's comforting to know there's a plan now, it won't be easy but I'm on the right path.

Hope you're having a pain free day and good luck for your lap.

Xx

[ASP789 in reply to LouLouT]

Thank you

How are you feeling now? Hope a bit better.

Yes you're absolutely right it is a daily challenge. I think it feels quite isolating as none of my friends have it/something like it and so it's hard for people to understand. I know I wouldn't have realised how hard it was before!

Xx

[LouLouT in reply to ASP789]

The pain was worse this morning but I think I've just been doing too much, feel much better now thanks 😊

My eyes are still so itchy it's driving me mad! Lol.

It is isolating, people just don't understand. It's why we've got to stick together, I feel so lucky to have found this forum 🤗

Xx

[ASP789]

Ah glad it's a bit better. How long have they signed you off work?

Was this your 1st lap?

An MRI showed I have deep endo and it's on my bowel too and i have cysts and various other things. So my 1st one isn't just diagnoistic he is going to do quite a bit including removing a fallopian tube if it can't be sorted. Just wondering how long recovery is? Xx

[LouLouT in reply to ASP789]

Hey, I've been signed off for 2 weeks (currently 4 days since my surgery) but my gyne said i might need longer. I've just got to see how I feel, I don't think there's any set amount of time. It was my first lap so I was really scared before. I woke up and I knew instantly they'd found endo before anyone told me.

That sounds more complicated than my surgery, I think they'll sign you off for 2 weeks initially then you'll need to see how you feel. If you do a manual or very stressful job you'll definitely need longer than 2 weeks. Yesterday I thought I was starting to feel better then today I've spent most of the day in bed, really struggling with the pain.

Good luck with your op!

Xx

[tiger-cub]

My dear that's a lot to take in a single surgery . I think you should have second and third opinion . I've been sufferer ever since 20 years . 5 ivf's not pregnant even now . And d dream of conceiving keeps from getting a complete hysterectomy . I'm crippled off and on from my endo pains. People don't understand my pain . Quit jobs bcoz of this disabilitating disease

[LouLouT in reply to tiger-cub]

Hey, thank you.

I think you're right I'll look at getting a few opinions before going ahead with any further surgeries. I'm so sorry you've had to go through all of this 😞

Me and my partner want to start trying in 2-3 years time for a baby but I know I may not be able to conceive, there's a lot I still don't know and won't know until we start trying.

Employers really don't understand, I've had a HR business partner snigger at me when I was describing my symptoms 😡

Xx