I'm getting ready for this appointment as I'm so fed up with pain and being dismissed as a making it up. So far I have had a lap done in my early 20s (I'm 46 now) knly through belly button which they said was clear and told it could actually cause endo to start. This was a general gynaecologist at small local hospital. Fast forward to now I've had kids but with each came heavy bleeding sometimes couldn't walk and threatened miscarriage as well as possible miscarriage of a twin. I've been told the tingling in my legs is in my head , the vomiting must have been a bug, the blood in urine is normal and the blood in stool (sorry) is ibs. Ive had colonoscopy which showed inflammation which they said was normal. All after a lot of stays in hospital with extreme pain only morphine helped with, and what i was told was a kidney infection but on my notes wasn't. I finally convinced them to send me to gynaecology October 2021. And convinced them to do a scan while I waited. Turns out the trans vaginal one did show a tiny 4mm possible endometrioma. I'm still waiting for my appointment which they say I'm getting to the end of the list but when I get there I want to be absolutely clear what I want done as its stopping me working. I'm self employed and my kids have some special needs so I can't have down time with pain.So I'm fairly convinced it's more than just a little bit and the pain in my left side and shoulders with slight cough everytime as well makes me think it's travelled although I could be wrong. I don't want them to half arse it again. Has any gynaecologist found it without being specialist? Is it best to have the coil fitted or just get hysterectomy? Does it stop after menopause? How long is lap waiting list in Norfolk? This might not be possible to answer. What did you find worked while you were waiting? Sorry longer than intended.
Pre gynaecologist advice : I'm getting... - Endometriosis UK
Pre gynaecologist advice
Hi l am a 76 year old who it seems May have similar problems.
Before any tests were taken which was several months l suffered with harsh constipation and vaginal bleeding since November 2021 which when l read the information pack given to me by my CNS nurse is a pointer to womb and uterus cancer.
I have been attending out patient gynea clinic for over a year now.
I had a partial hysterectomy , cyst, ovaries and Fallopian tubes, just before Christmas which has helped somewhat but was told at my post op consultation that my endo which had been measured at 1.9mm is in fact 9mm and they have found cancer when they took samples via hysteroscopy. I now have MRI scheduled tomorrow after which I am to be booked in to complete the hysterectomy and have a 12 day course of injections to ward off further cancer growths.
Sorry if this is lengthy, my point is keep a diary of everything and take it to your appointments it was only after the above operation that my situation came to light and my case is being brought before the hospital board.
Stay strong and if you have a good relative or friend who can attend these clinics with you make use of them, my daughter has been my rock during this almost 15 month journey.
Hi Thank you so much for your reply. I'm sorry for everything your going through and will definitely take your advice. Take care and all the best with your journey.
hi
There are no guarantees with endometriosis. Whatever your treatment, everyone is different. The tingling in your leg gives a clue that you may have a back issue. There is a ligament that passes near your ovaries, which when inflammation occurs and pain that can cause the ligament to pull and your back goes out putting pressure on the nerve causing the tingling. See a good chiropractor, one trained at Bournemouth College. The should put that right. The other option is to get your nutrition right for you. Dian Shepperson Mills wrote the book “Endometriosis: a key to healing and fertility through nutrition” see endometriosis.co.uk
Thank you I understand everyone is different I'm looking for averages and best guesses really. I will look at the links suggested.
Hugs. Dire situation, so all the support.
I hear the frustration and fear around coping with this and juggling everyone else’s welfare. If you can afford to I would go for private specialist MRI and appt with the endo specialist. Quickest non invasive route. At least then you know what you might be facing. At 46 then also consider adenomyosis and menopause ( try Louise Newson’s Balance site for info ) I found things spiralled badly with the up and down of menopause and became dysfunctional for work and being mum. If I had the right help it would be likely radically different . It all took too long. So my point is if you can especially with the NHS with such long delays get the best support you can muster. My strongest self management helped me day to day and still does with the following useful guides ( not the only ones either !) @pelvicrecoverypt ( Lots of online info and resources on why this is important , Kate Edmonds @healendo has written a brilliant book explaining a lot about endo, what’s on offer, sound nutritional nudges and what a the latest understanding. It’s all to easy to disappear down a rabbit hole to cope but knowing what is going on is important for your mental health as well.
Whatever you do make sure whoever you see is the best for the job. Really grill them and check them out.
Thank you loads of really good info. I will have a look into everything not private unfortunately but thank you for your reply
Keep pestering once you get someone suitable - it can get so frustrating when you find yourself “lost or forgotten “ on the lists. Friend of mine did a crowd fund for herself and I was gifted some care by rellies which got me the care I needed on the NHS after getting past the bottlenecks. I am eternally grateful for that help. Hope you get your help sooner xxx
I’m following your post with interest because I’m on the waiting list for a second opinion in Norfolk after a lap through my local hospital was clear. Not sure about the lap waiting time but I was told the general gynae wait list was 72 weeks, I’m currently on week 43 of that 🤦♀️ I also have potential diaphragm/thoracic symptoms as well as bowel and bladder, so would really appreciate hearing your journey and how much you feel you are really listened to.
It sounds like you’ve coped incredibly with so much difficulty! The waiting and second guessing yourself all the time is really hard. I’ve had some counselling privately that has helped me learn to manage that a bit better, but still have a long way to go. I also know there is a BSGE specialist endo centre in Norwich, which I’m hoping means that their general gynae might also have a better awareness/understanding of endo…
I really hope I can keep you up to date so it gives you some insights. To start I've been on the list since October 2021 and funnily enough got my appointment today. I'm seeing them on the 18th as they have started doing weekend appointments to clear the backlog. I hope I get some answers and help but I'm not holding out much hope after everything. Good luck with your journey
I really hope you get some progress, that the appointment goes well and you feel you can say all you need to!
Hi,
I live in Norfolk also, after going through PALS due to not being treated very well, I was put on the waiting list to have a laparoscopy October last year, due to have it next week. Unfortunately you have to fight every step of the way, but PALS are great.
I’ve been taking co-codamol, naproxen and more recently amitriptyline and oramoph for the pain. Also heat pads and tens machines are good.
Good luck x
Hi I'm sorry I didn't see this sooner. I'm sorry you've been through that and a little concerned I'm going yo face the same thing. I hope you lap goes well or went well.
Thank you, and good luck to you x
pre lap care (long post)
General Gynaecologist secretary keep phoning after I cancelled lap Update
Worried paying private for lap won’t show anything 
Mirena Coil Problems.. advice on what to do next?
Pain Advice needed!
