Went to a private gynaecologist who said 95%sure I’ve got endo and I should request a specialist however he sent a letter to g.p it Dosent ask my g.p for a referral just says I recommended you seek excision from a specialist.the thing is now my g.p is not in till 17th that’s another 2 week Would it be best to go to pals and tell them my issue or wait for my g.p we do have another g.p probably but have to wait again 2 week or ring in morning And still it’s only a probability I’ll get an appointment.may get another but all other g.ps are male I’m not being sexist but not had a great experience with the other g.p then there’s nurse .hope you understand what I’m saying sorry to waffle .things aren’t going my way lately having issues with work etc thinking I’ll have to go back !going to see if I can go back on a Sunday contract partner said he can support me but don’t want it all on him way money works out we’re not that much better off when I work anyway
My sick note runs out on 5th how do I put it across to work I want to go back doing less hours till I’ve had an operation
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Hi,.sorry to hear you are struggling. It's not easy at all. The waiting. As you probably know, the usual wait time for diagnosis can be up to 10 years which is insanity. However, I'm not sure what Pals could do for you. I could be wrong but I thought pals was for when you are really not getting anywhere or have been treated badly and need to make a complaint? What would you be hoping Pals could do?
Avergae wait times for NHS elective surgery vary so much in different regions. Especially for endo surgeries. Obviously you did such a proactive thing and saw a bsge surgeon privately so that's at least a positive that they gave an opinion and sent the letter to gp. You can ask the GP to choose a specialist of your choice now on choose and book. I know you can't choose a bsge surgeon because you don't qualify yet but you can definitely find a skilled surgeon with a bit of research and ask to be referred. You will have a long wait no doubt but we all do unfortunately. I was lucky in that from appointment to surgery it was only an 8 month wait I think. But I already had a diagnosis so I think it made it move quicker. That was short for my region. Having endo surgery on the NHS is not going to happen within weeks. I'd be estimating a minimum of 6 months.
Its totally unfair and engaging but I found once I stopped expecting things to happen quickly and tried to manage pain via pain management etc and holistic therapies I was less stressed and anxious.
I’ve not really got anywhere with gynaecologist they referred me for a lap but not with a specialist in endo he kept talking about my misscarrige and wouldn’t give me an mri to check for Adenomyosis which apparently can cause misscarrige but he gave me other blood tests. when I saw the private specialist he said I should be able to see a bsge surgeon because I have nodules and sign of bladder issues
Ah, sorry I misunderstood. I thought you saw a bsge surgeon privately. If so, they would usually refer you then or explicitly state this to the GP. They have to, I believe.
I saw a bsge surgeon privately who did also say he could feel nodules in me and suspected recto vaginal endo which surprised me as I had 2 surgeries before which didn't indicate my endo was that deep. Because of this he referred me to his NHS clinic that day. He worked in a chronic pelvic pain clinic aswell as a bsge centre. He referred me to said pain clinic as he wasn't sure if I did qualify for bsge even after the exam and prior surgery. I had also had an mc and 2.5 years of unexplained infertility at that stage. Anyway, he ordered mri, urology and correlectal review the same day he scheduled me for surgery. This was all done under the pelvic pain clinic. I am not sure you can qualify for a bsge centre due to feeling a possible nodule but then again I'm not an expert just going on my experience and the many women I've spoken to online over the years. I don't mean to be negative, just realistic. Unless the criteria is different in your area.
I had 2 surgeries, documented extensive superficial endo, bsge surgeon felt a suspected nodule, and still I had to have what was still called diagnostic surgery with him before being referred to bsge centre. They only take on the most complicated of cases because their accreditation is apparently somewhat dependent on proving abilities in these.
If I were you, I'd have a look at the user "Lindle" s page and see if she has explained what I am trying to, better than me. This woman, Linda, is literally more of an expert on your rights and the right pathways than most general doctors or even some gynaes. She has explained previously how many amazing surgeons are not bsge accredited but can do exceptional endo surgeries. It is rare (nor unheard of) to get to a bsge centre for your first surgery unless you at least have an mri that shows die and a strong recommendation from the surgeon/doctor.
Have you brought the nice guidelines for referal pathways to your gp? Even with suspected endo, you have a right to see a surgeon with special interest. I comptekt understand the desire to have only a bsge surgeon do your initial surgery but I do think for that to happen you need an mri because they heavily go on those for showing more severe disease.
I'd consider asking for urology referal to rule out/in IC. I have it, it's just as painful as endo but I have regular bladder distensions and botox to help it. I did also have die in my bladder though and since excision it's better.
I'd also be suspecting adeno as you mentioned. Adeno often comes on later in life whereas endo for many seems to have been there for many many years. Adeno is sheer hell for me. I knew I had it for years and then the mri showed it had advanced significantly. Even though they can't do much for it, psychologically it helped me accept that I may always have pain and it's not necessarily going to be fixed by surgery.
I hope I'm not being too negative here. I can hear the desperation for answers and pain relief in your posts. I have been there and it's a dark place to be especially when you feel like you may get somewhere and face setbacks. It's a horrible place to be. So I'm just wondering if pursuing non bsge but still skilled in endo surgeon would be quicker and better for you right now. I could be way off. I'm just trying to help and thinking of solutions. It's a long lonely frustrating journey that I understand all too well.
in reply to
Oh and also, I had the surgery and there were no nodules. He couldn't explain what he had felt and blamed the fact I am riddled with fibroids
Oh dear I’m so sorry yes I don’t know how I would go about all this the person she referred me to has no knowledge in endo as I said I had a lap booked but the lady you was referring to once said to me I should push for bsge and that’s what I’ve been doing because I bleed out my bowl so first thought I have rv endo it’s so complicated also I’ve had 2 open abdominal surgeries so didn’t want to have one for them to close me up also my next baby will be a c section as ttc so I need to be careful what surgery I have on my abdomen
Hi I hope you don’t mind me jumping on your reply. I saw you mentioned IC, is that interstitial cystitis? I’ve just recently been diagnosed with that but don’t see my consultant till 6th March. Can’t really find much info on the net about it. Do you have any useful info/tips that help? Thank you xx
Pain in abdomen when passing urine. Bladder never feeling empty. Feeling like I need the loo all the time especially during the night. I never really saw this as a massive issue but got diagnosed with interstitial cystitis when I had my most recent lap and cystoscopy x
Also, there are some great Facebook pages for support with IC. When I lived in Aus it was much more well discussed and known than UK. There are some great UK fb pages if you have a search. I've left them all as I was too obsessive thinking about it all the time but when I needed help they were super useful
Yes interstitial cystitis. Sorry, I always assume everyone knows what it is. Doctors call it the evil twin of endo. A great urologist is a start. I had regular bladder distensions for the frequency issues but pulled back. Used to take solifenican for the overactive side of things that helped a bit. Symptoms for me were severe pain on bladder being full, on emptying right at the end. Constant symptoms of uti but never tested positive for one, ever. It's horrid. But I don't know, since I had endo excised from bladder symptoms were massively reduced. And I've also found out I have a kidney disease so I'm not sure what was actually related to what now. What symptoms do you have?
Sorry I didn't see the other replies when I replied. Some people can be misdiagnosed as having IC when it's actually endo and vice versa. They have very similar symptoms. I don't think you can start having symptoms for IC suddenly. I have had bakdder symptoms for years and years. As long as I can remember. Always needing to go. Up to 8 times a night. A urologist can also do a quick scan when you first meet them. They ask you to have a full bladder and then empty it and scan it to see how much was actually emptied. IC can only be definitively diagnosed via cystoscopy as they can usually see the inflammation and also when they do a distension they watch your heart rate to see if having a full bladder causes it to increase. A good gynae will ensure you have a cystoscpy before any endo procedures if your main symptoms are bladder related.
Thanks for the reply. It’s awful isn’t it. Like I said earlier I literally didn’t see my bladder problems as “problems” thought it was completely normal. I suffer with all the same things you mentioned. Did you have endo inside the bladder as well or was it just on the surface? Like you said on your recent reply about become obsessive that’s exactly how I’m feeling at the minute haha! xx
Yes inside the bladder and on the uterovesical fold. I honestly can say since excision the painful urination and emptying and frequency is more than halved. But I did also have a couple of distension right before surgery so it is hard to say what helped most. Mine was always ten times worse during ovulation which makes me thinks endo was causing more of it but again not sure. Are you seeing a decent urologist? Mine worked with the Bsge endo teams so I was very lucky he understood the link a bit more
Sounds like you’ve had a lot of support I’m struggling to get anything resolved my symptoms with my bladder started when my endo symptoms did the doc said I should wait till I see a gynaecologist but he did nothing for me about my bladder or anything really I feel like so much time was wasted my pain diary was ignored and he only talked of my recent misscarrige I have awful urges at night going up to 8 times it hurts real bad when it’s full sometimes I have pain up to my ribs with it .im not on any Facebook groups I don’t go on social media it’s another thing I find very exhausting and can affect your mental health like you said having health unlocked is enough for me sometimes we have to put a stop on obsessing and shift focus to things we enjoy x
I didn't have any support for years either. It was only when I moved to the UK and after a year of getting nowhere and even waiting 7 months for an "urgent" gynae referral that I paid to see a bsge surgeon privately. He set the ball rolling because he knew my endo had failed to respond to poorly carried out surgery and he could even see endo that had been left on the lap pictures I gave him from the previous one. It might just be a case you need to keep searching for that type of doctor
Thanks I saw a specialist privately he just wrote a letter to a g.p just got a call from docs cancelling my appointment so annoying.got another day to wait and looks like my g.p is leaving
I work in retail but not the standing around light duties type.pushing cages heavy lifting and so forth .do you think I should email secretary as when I asked the specialist he said theirs no short cuts and my referral has to start from the beginning starting with my g.p he mentioned nothing about his list other than it being a 9 month wait he said I have to do private or nhs I really wish I had money for private no health insurance Or anything me and my partner tried to see if we could come up with 6,600 and we just couldn’t manage it unless we were to dip into Some of the family’s pot and I couldn’t see my self doing it as they need it in a few years
In retail there will be other tasks you could do, even if it means a bit of retraining, speak to ACAS to see if they have suggestions or if you have an HR person talk to them. It’s all about reasonable allowances, especially with a fit note involved.
I paid about half what you’ve mentioned, sold some bits. That included laparoscopy and treatment. Did this yesterday, but it was ok in the end. Will take a bit of recovery though, and painkillers.
He said he had to offer something within the NHS guidance of 18 weeks, but that was probably never realistic. It took nearly two months to get this far, although Christmas etc got in the way.
Are you ok to p.m me the details of who you are seeing i started selling a lot of my things I even made £300 when I knew I haven’t got the money I spent in on a very expensive hair dryer to cheer me up 🤣but I’m still feeling in loss and despair looking for cash my partner said I should get on street corner pmsl 🤣I really wish id done the right thing and had been saving but I stopped saving years ago feel guilty for that
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What pain relief do you use? Also, sickness with endo?
still waiting for hospital referral and unsure what to do…
What do you use to manage your pain?
What Long Term Pain Killers do you use?
I am building an endo app to share what helped along my journey. What would you find helpful?
