Surgery finally scheduled but feeling so lost!

[Leenie0811]

Hey everyone,

I hope you’re all doing as best you can, I had a phone call with my endo specialist a couple of days ago and I’m being scheduled for another laparoscopy as my endometriosis has returned from my 2017 surgery but it’s affecting my bladder and bowels a lot worse now. I’m grateful I’ve been listened to but I’m so lost because the wait is two years until I can get the surgery and I’ve already waited 18 months to get to this stage after being hospitalised.

They’ve said I’ll go onto prostap with HRT in the meantime and setting up an appointment with the clinic. The thing is I’m not worried about the injections, I did kind of set myself up for needing that as it was discussed at my initial telephone appointment. What I can’t believe is that it’s going to be 2 years of waiting, I feel so defeated!

It’s like putting your life on hold for another two years and I’ve already done that through shielding most of this pandemic. I’m so fed up and really struggling to make light of my situation. I still don’t have any children and worry this time will further impact my ability to carry my own kids. Am I being too dramatic or as I’m nearly 30 is this something I should worry about?

I’d really appreciate anyones help on this, thank you for reading.

Leenie xx

[Heloo85]

I’m in the same boat as you! I had my first surgery 6 years ago, almost! In 2020 I was hospitalised with an endometrioma that had abscessed! It took months to get that sorted! Then March 2021 I was put on surgical list to have my ovary removed off my bowel! Then things changed to total hysterectomy due to MRI results and my level of pain, and told it was going to be a minimum of 2 years wait because I need a multi-disciplinary team and a theatre slot longer than 5 hours!

So I’m in the same boat! I was on Zoladex at first then switched back to the pill back to back! The pill offered more relief but I’m still not well, and I do have a tendency to break through the pill, so I’m currently constantly having periods closer together than I should!

Unfortunately there’s a lot in the same boat! Do you have a partner? Maybe while you’re waiting you could look into the fertility options available to you(?).

I don’t have kids and won’t have kids now as I have it all being removed!

Best of luck!

[Leenie0811 in reply to Heloo85]

Thank you so much for replying, you’re really in a similar situation to me and I’m so sorry you have to go through a hysterectomy lovely I wish you didn’t and if you need anyone to talk to I’m happy to chat. How did you find the injections were there any bad side effects taking it with HRT? I wish we could all get surgery sooner and stop being in so much pain! Writing here it’s bittersweet because you know other ladies understand and are in similar situations but none of us should be suffering in pain like this. It’s really not fair at all xx

[Jane884]

Hi Leenie, I'm so sorry to hear you have such a long wait for your surgery, this seems ridiculous. I waited only 3 months for my diagnostic laparoscopy which was referred in October. Obviously your requires a specialist centre, so that must be why your wait is longer.

If you haven't asked already, it might be worth asking of your surgery can be completed at a different centre that has a shorter waiting list. Apparently you can look at NHS waiting times for specific procedures at and particular NHS trust online. If you request a hospital you can't be denied, as long as they have the required specialists there.

x

[Heloo85 in reply to Jane884]

Unfortunately people with confirmed Endometriosis that effects more than female organs have to be in a centre with a multi-disciplinary team!.. They cannot be touched by your standard gyneas! It’s a pain waiting but it’s also the only way to assure any treatment success!

Laps are different! Any gynea can do a lap! If severe disease is discovered then they have to, by law, close up a refer to tertiary care, BSGE!

But because every man and his dog is currently pushing their way to Endometriosis Centres, including those that haven’t had a confirmed diagnosis, it pushes the waiting lists longer for people in our position, and because we are so complicated we get pushed to the back of the queue!.. It is a bit of a joke as the severely ill people pay the price!

[Jane884 in reply to Heloo85]

I am aware of most of that, just clearly ignorant when it comes to waiting times. I have just been referred on to a specialist at a bgse centre as my surgery will require a multidisciplinary team too. I didn't realize waits were as long as that over the whole country, I have heard people getting surgeries sooner than 2 years on here. I'm hoping on everything that this isn't the same everywhere, 2 years I'm not even on the waiting list yet, God knows when I'll see the even see specialist to get the ball rolling 😫

[Leenie0811 in reply to Jane884]

Yeah Heloo85 is right, I’m from Cumbria and have to travel to Manchester St Mary’s to have my endo looked at but my gynae is amazing there, he was brilliant in 2017. I don’t think I would feel comfortable going into another gynae’s care as previous to this I had bad experiences with local hospitals gaslighting me. I do appreciate your suggestion though, thank you very much for responding. It’s a horrible thing to be in limbo with no timeline, this group is so supportive though and if you ever need anyone to speak to it’s amazing. Health unlocked has helped me so much over the years! Xx

[Leenie0811 in reply to Heloo85]

I totally get this, my local hospital told me I had nothing wrong with me and refused to do any further testing.

If this is happening for other women they’ll probably want to go somewhere like the specialist centres, it’s good that the knowledge is spreading but we need more specialists in the field of endometriosis. Is it 1 in 7 or 1 in 10 women have endo? And there’s only a handful of accredited centres? I heard somewhere endo can spread the same rate as cancer does and it’s shocking when you hear it like that. We are paying the price suffering and waiting I wish more could be done for us all xx