Frustrated and hopeless....

[Hungry_armadillo]

I just wanted to vent and share with people who might be going through something similar.

I am nearly 35 and have been waiting for a date for my excision surgery since November. They think my endo is now stage 4 and in my bowels, bladder and ureters. Despite being at the top of this waiting list I cannot get a date.

I have been calling every two weeks for updates. They mainly do surgery's at one hospital but I can't have my surgery there due to them not having an A n E department and me having a condition that makes my surgery higher risk. The hospital I need for surgery hasn't given the team any surgery slots in months,they don't know what exactly is causing the delay or when it is going to be resolved. I have tried escalating and nothing is working.I am in pain everyday, I haven't had intercourse in months as frankly the pain makes it impossible.

We want to try for a baby, all this waiting and the approaching dreaded 35 made me pay privately to get my AMH levels checked. The results were bad, my levels are very low and well 0.2 away from being the bracket that has a successful rate of 13% with IVF. I don't think it will be long until they drop another 0.2 and put me in that category.

I am just so frustrated and angry,I do not have time to wait any longer for this surgery. Waiting for this surgery is going to take our chances from slim to impossible.

I am stuck, I have the coil in can't have it removed while I am awake (very narrow cervix, that they have to cut open to put it in and take it out,this has been done during previous surgeries). Even if I could get it out, we can't have sex its too painful currently.

The first time I wanted to do when I got the results was call my mum to talk about it but she passed away last year and that broke my heart even more.

Going private isn't an option I got a quote for the surgery as a day patient with no follow up and it was 15k. My consultant said I could be in hospital for days depending if they need to remove any of my bowel and put in a stoma.

thank you for reading.

[CryBaby91]

Oh love I'm so sorry, I wish I could tell you how to be seen sooner (other than paying) but sadly there isn't really a way to do it. I too was on the urgent list and I waited 57 weeks in the end, so just over a year.

Are you on any pain relief while you wait? Your GP should be able to help try keep you moderately comfortable while you are waiting. You shouldn't be left in pain love, I know nothing will take it all away but having any relief is better than nothing. Are you using any heat or cold relief? I use multiple hot water bottles and a heated pad that i can lay on, it's perfect for back pain! I also avoid red meat, and i limit my gluten, dairy and caffeine intake because that can make things worse.

I really wish i had something to say on the ivf front i know it must be so hard with endo and fertility worries on top! All I can say is I'm sorry you're in this position

Totally agree with sex being painful! Are you guys making sure you're still being intimate at least? So you still have time being together and being close. Foreplay is massively underrated! Sometimes my husband and I don't have full sex for weeks because of my endo, but we do lots of foreplay, massage, cuddling, kissing and just generally try to keep our relationship loving. I know that doesn't help on the pregnancy front, but it will be important to keep you guys strong and happy together. Which lets face it, if we don't have good love and support...it makes all this so so so much worse.

Sending love and hugs xxx

[laurenadc]

I’m so sorry you’re having to go through this. I went through similar, I was waiting for a surgery date for 18 months, and that was after I’d paid privately for a laproscopy just so they could diagnose where my endo actually was. Mine is bladder and bowels too. I also have problems with my cervix too, which previous ivf investigations had to cut through scarring each time. In the end I ended up doing my ivf whilst I waited for a op date - I completely understand the frustration of being made to wait, and you have to do what’s right for you. After a few rounds I managed to get pregnant, and then received my op date a month later (of course!!). Endo symptoms have eased whilst pregnant, and I’ve been given an appointment with the hospital next year to discuss surgery again. Sending you lots of love xx

[Kazh1209]

could your doctor refer you to a bsge endo centre to see an expert at all? I’m not sure if the wait though but I’m so sorry you’re going through this x