I am really struggling at the minute as my pain and symptoms are getting worse by the day and I still haven't been given any indication of a date for my excision surgery even though they told me on 1st December it would be less than 6 months (I know it hasn't been 6 months yet but I haven't even had a pre-op letter and they keep saying 'sorry the wait times are bad at the moment).
My wonderful GP (I know, rare) wrote a letter to the consultant asking her to expedite my surgery because of how poorly I've been and how badly this is affecting my life (my mum and I were both sobbing for the whole appointment and the poor GP didn't know what to do bless her😅). However, they have now responded saying there's nothing they can do unless I want to go back on the pill (I have already tried 3 different types and they all made things worse or caused horrible side effects) or go into chemical menopause while I wait - neither of which I want to do.
I suppose my question is, has anyone been in a similar position before and done something that helped speed the process along and get a date asap because I really am just desperate for some relief at this point I can't do this much longer. I think I may start calling the admissions office every day and maybe I'll get on their nerves so much they will do something lol.
(For context - they found both endo and adenomyosis on my MRI scan so they know it will be an excision and I am being treated in Birmingham Women's so if anyone else had a lap there in the last year, how long did you have to wait?)
Thanks in advance💛💛
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endo_the_stigma
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I’m so sorry to hear you’re struggling so much at the minute, I feel your pain! 😖
Last year when I was waiting for my second lap as I was the same as you I just kept calling the booking team asking for cancellations and eventually got one for a week after! So it’s definitely worth trying that 🙏🏻
Hi I was absolutely desperate after being told i had to wait at least 1 year for an initial consultation, I couldn’t go on any longer and I paid for a private consultation which cost me £200 (it’s often a doctor you would see on the NHS). I then asked them what list they could put me on, urgent, category 1 etc, you can ask to be placed back onto NHS lists for surgery or scans etc …. I always feel that when I’m paying for my consultation that I can have more of a day and I tell them what I want / what I expect.
Thanks for replying! I did pay £200 for an initial consultation with a specialist and another £400 for an MRI which showed my endo and then he referred me back to the NHS for my surgery back in August last year but so far the waiting is ridiculous😔 xxx
Sorry you are in so much pain and also the fact we are expected to somehow wait so long suffering.
I used to ask how many weeks of the pathway have I waited already e.g here it is a 74 week pathway for surgery. I also used to ask "the women having surgery now how many weeks they have waited" (about 80 weeks last time I checked before my op last year). It is handy to ask for contact details of the theatre coordinator If possible rather then general gynae etc .
I finally had MDT surgery last september for stage 4 ( bowel disc shave, left ovary and fallopian tube removed, and ureter surgery too) but unfortunately paid private as regardless of contacting explaining severity of pain ( pelvic pain not reduced with opiates or even induced menopause, daily defecating blood, weight loss, naseoua etc) , expedite by my gp and a colorectal surgeon; I was told its "benign gynae" thus being down as urgent didnt help me personally. I was told at least 80 week wait and by then my bowel issues got worse- I was in such a bad way I paid private. This was about 9 months into my nhs wait time knowing I wouldnt cope waiting any longer.
I would suspect this is very area specific too, so still think it's worth contacting them regularly for updates as you have been. As someone had said maybe asking for a cancellation list (I was told my friends mum had her hysterectomy earlier by doing so), raising with pals and using the expected pathway times as a rough guide.
Thanks for replying!! Wow, so sorry to hear you've been through all that babe 🥺 That's good advice, thank you! I have started calling admissions every morning and I will also email PALS and go from there too xx
Really hope you get the op ASAP. Please keep us updated. Yes I think it's good to also raise with PALS in writing/ via email. They had been good with me before raising with the relevant teams etc. Definitely worth asking what number of weeks you are on the pathway to kind of gauge when you may be x
I’m in a very similar situation and it’s really getting me down. Almost every day is spent mostly in bed dosed up on pain relief with no life at all.
I went to see a new specialist in November, barely got a chance to speak to explain my symptoms and was told they’d have an mdt and I’d have a follow up in a “few weeks”. This follow up never happened, I then discovered I wasn’t even seen by the correct specialist and they’d used a locum “to get waiting lists down”.
I now have a follow up next week, then I’ve got to wait for colorectal appointment which is another significant wait and then hope they actually communicate with each other to get a definite plan in place.
This will be my final surgery due to extensive scar tissue and last excision left me in constant pain but they don’t seem to realise the importance of it to my life.
Apparently mine is also an expedited case as specialist from my local hospital wrote to them (I’d already been referred) following hospital admission saying it was too severe for him to deal with.
A total nightmare.
The only two things I can suggest is writing to your MP and also emailing pain management secretary for stronger pain relief to tide you over. Also request with hospital to be on the cancellations list.
You do right not going on the pill or those horrendous chemical menopause injections.
Wow, that is absolutely awful I'm so sorry you've been through so much crap and poor treatment!! I am on the cancellation lists but nothing come of that so far - didn't know about writing to my MP so might give that a shot, thank you so much xxxx
I had a similar experience. I had been in and out of A&E and the GP surgery for two years with severe period pain and heavy bleeding. I got referred to gynae and was waiting over 9 months for an appointment, I was still attending A&E and my GP every month, my GP wrote a letter to expedite, unfortunately this did nothing. It was only after a visit to A&E where I waited 9 hours to see the gynae consultant, where I was given oral morphine that didn’t touch the pain, and I cried to the doctor and said how I was in so much pain I just wanted to have all my reproductive organs removed to try and stop it (I thought this would end the pain and I was desperate)
The consultant said she would contact another consultant to try and rush my appointment and within 30 days I had my appointment and within two weeks of that I had my surgery.
I would advise, although it’s a shit experience when you’re in severe pain, attend A&E to get the pain relief you need. As I feel you’re only taken serious about your condition if it can been seen you’re so bad your having to attended A&E. There have been many times I could of been in A&E to get help with my pain but the thought of sitting for 9 hours in agony to see a doctor is unbearable, but unfortunately to get noticed and taken seriously I feel it was the only option for myself.
I have now had a lap and MRI that have both shown deep infiltrating endometriosis.
Thank you for replying! That's very useful to hear your experience with this because recently (the last two months ish) I have been very very close to going to A&E because the pain has been so horrific I've been biting down on things to stop from screaming and my family have begged me to let them take me to hospital but the thought of waiting for so long in that much pain is just awful. But that does make sense so maybe now I need to be strategical and go to hospital every time it gets that bad. Thanks again, best wishes to you xx
I am in the same situation as you, my pains are incredible more and getting worse by the day, the consultant has started me on prostap injunctions before surgery, i havent had any confirmation when the surgery will be and the pain is increasing daily. I feel like nhs is trying to prolong the treatment and flogging me off!
Completely agree, it isn't good enough and no one in the system seems to understand the impact it is having on every part of our lives😔 Sending hugs to you xx
Waiting for surgery for 4 years which included waiting a year for initial consultation and another year for follow up - they are just very over stretched. You can asked to be referred elsewhere, just do your research and find out wait times at other places. Had surgery cancelled a month ago, still no reschedule date. Have stage 4 endo with bowel effected, bilateral endometriomas and adenomyosis
hun am in the same boat had to wait over a year from my diagnositic lap to know only having surgery in 9 weeks time seeing the colerectal endo specialist surgeon at the end of the month. And it took near on from April to November for me to see the endo specialist pain clinic dr and she has said I have probably got fibromyalgia as well and that doesn’t help. I’m a person who is sensitive to medication and can only have things like naproxen and amitripttiline tried stronger drugs would take the pain away but I couldn’t function and kept falling over and hurting my self damaged my knee and hip and ankle . Was put on a medical menopause and my mood dropped significantly thankfully I have a good gp and upped my medication so am back to my normal bubbly self xx it’s hard the dr tried to expedite as my symptoms severe but to no avail just told other people waiting too .
Thank you for responding! Yes, similar happened with me and the letter from the GP so I have decided to complain to PALS (other things have happened too) and see if that makes a difference because I have been literally begging them for help with this pain and they just don't seem to care at all😔 xx
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