Today I received my copy of the letter sent to my dr after my recent gynaecology appointment and I'm really upset as the Dr I saw has not mentioned my pelvic pain which was one of my main concerns as after a lap and excision in June on my uterosacral ligaments, the pain is much worse and walking, lying down and sitting etc is v painful.
All she has wrote is that my periods are worse and about my bloating which I did mention but not in much detail as with my back. Even in front of her my back locked and I couldn't move and was in tears and the internal examination was excruciating too
I'm very concerned that this will impact any future care and treatment etc. Any advice as to what i can do about this?
I was treated at a BSGE specialist centre.
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I would put everything in writing all your symptoms and forward them on to the consultant and state that the symptoms she wrote and not the only problem at all stress your main issues send her one and also send one to your gp and keep a copy.
Also any future appointments you have write all your symptoms down before hand copy them and even make a diary and at the appointment hand them it to file then there's no need for anything to be missed. Your helping them do their paper work and making sure they have all the correct information.
I know that's what I'm going to start doing because iv noticed that notes don't get taken when in appointments and things can easily be forgotten once were out of there.
Hope this helps and hope you get the treatment you need .☺
Thanks very much for your reply. My drs have it on record I think it's just the gynaecologist and I'm just worried that it's going to set me more back. Going to try and get in touch to amend
Hi if your symptoms have increased after the laproscopy, whomever is treating you should be paying attention to this, whether that is your GP or a gynacologist. In terms of your future treatment, it seems we need to drive this as patients. Sadly we sometimes need to educate health professionals on endometriosis. You may well have some left there, or it may be growing back.
If you have a good GP they will be listening to you about your symptoms and helping advise you with hormaonal approaches, pain management, fertility , referrals or whatever you need for the future. If you don't feel confident your health professionals will back you with what you need please don't be aftaid to try others. I live with deep infiltrating endo, removed from utero sacral ligaments years ago. I have had to navigate a very lacking health system in a regional area and have tried several general gynae before finding one that listens. Good luck & hope you feel better soon
Ps. Have you read Lindle's post on deep inflitrating endometriosis in utero sacral ligaments? Although I have been living with it for years along with spinal issues, reading this post earlier this year has helped me understand it more, why this particular kind has such a specific pain pattern.
I'm not sure I have read her specific one, I have read up on it a bit but got a bit overwhelmed by it. I remember mentioning the endo being die to the gynaecologist who I saw recently and about the possibility of it still remaining and possible nerve damage but I was ignored and told to continue with the coil and it won't be back yet and hormones is the only way to help. My uterus was perforated to and thought this may explain the bloating and swelling etc but was told I'd be really ill if it was that
My GP was good and tried to help with different pain relief after the operation it's been very difficult to find something that helps with pain and didn't make me to lethargic as impacting work a lot. I was then referred back to my Gy at the bsge centre who basically fobbed me off and was like the cramps are due to the mirena coil and give it another 3 months so 6 in total and she's positive I'll be better. I was given cerazette to take alongside it. Had to see Gp who have gabapentin but it's not the best.
I just feel so depressed and frustrated with it all tbh and at a loss
If you are in the UK, did you see a BSGE Centre 'Endo Specialist Consultant'. If not, it sounds as if you should have done, and I think you need to be referred to one now. See the 'Endo Uk' website (link at the top of this page) and find contact details - email / phone - to talk to their trained advisors. Also their site has a link about BSGE sites.
Otherwise, I agree with what Miss Worried has said.
So sorry you are going through this, I hope these links help.
Sounds like the surgeon's attitude was Jon down and move 😡 Don't think this is very acceptable. Could she suggest anything else for your pain?
I have to say even though I have received excellent care from the consultant. He was never that bothered about my pain either. In fact I saw four consultants and no one is bothered. Lucky he removed all the lesions and I am pain free. I had endometriosis effecting ureter and other places. They are all really obsessed with the ureter problem as this in clinically significantly but pain no!
Could you go to the surgeon in a couple of months for another review?
Hi thanks very much for the reply, I was feeling exactly that especially as she was like we've removed it and it won't be back yet which I didn't even think. I suggested die and nerve damage but was like yeah maybe but the coil will help, wait three months despite all the pain, very frustrating
Hi, I know what you mean about feeling overwhealmed with information at times. I'm glad to hear your GP listens. A perforated uterus sounds just awful. Surely that would be looked into with ongoing pelvic pain? I guess you could still be healing but at 6 months that sounds wrong & it's not on for your gynae to fob you off like that.
I am at a stage of trying to just manage symptoms now but I think that pain management strategies should be a part of good medical care for endo but doesnt seem to be. My gynae did a review of my medications gp had prescribed for managing hormones & pain. Which is just as well as I don't have access to much else where I am. At my stage of managing things I also find krill oil helpful as I dont feel right taking NSAIDs all the time or as often as I have 'endo' pain. I would like take them always. I find laying on an electric heat pad & tens good too for taking the edge off crampy feelings and gives a sense of comfort when I'm feeling down. Hope you get better
The perforation was small apparently and the gynaecologist had to look for it in the notes but couldn't read it properly but was like id be really ill if it was that. The pelvic pain is my biggest concern as simple stuff is hard and it's really impacting my life. I did say to the Gp that I want something that'll help me get back to a relatively normal life but nothing so far. Going to make a list of everything and get back in touch. It's been 4 months currently but I'm to give it 6 in total as the gynaecologist was certain that the mirena coil will help and just gave cerazette to take to. It's bad enough trying to manage pain when you're full of hormones and strong painkillers. I wear a sticky heat pad at work on my lower pelvic area and my lower abdomen too as that can really achr and be painful when having a flare up but i get so hot nowadays that the heat which I enjoy usually can be too much! I've heard of krill oil for pms from a monthly period box so will look into that.b thanks very much for your help
Thanks for posting, it is good to hear of others experiences. Yes, I have the same trouble with NSAIDs and my GP does not like me on them too much but they really help. I worry about the health risks with those medicines a bit with kidneys too. I use parecetemol 4 times a day always. I find the little tens machine very good too, it gives electrical impulses through stick on pads, which sounds like it would be yucky, but the feeling I get from it is like after good exercise and it boosts my mood too. I do also have to take strong painkillers but have been able to keep them very low over many years by using other pain management things alongside. It is always a journey of the pay off of a medication to stay working or having some kind of quality of life then crappy side effects. I dont like the loopy feeling of some of them either. I take 'buscopan' too which is otc but I find really wonderful for cramps. I also sometimes take a medication called 'baclofen' which is an anti spasmodic It is hard on the stomach but seems to help when my back is spasming. I have not had much luck with the stick on heat things so far. Do you find gabepenton of any use? I had a reaction to a similar one called Lyrica and have not been game to try anything similar. I am also a bit over trying different things and feeling like a guinae pig sometimes but feel grateful to have access to medications to improve my quality of life. I hope your pain clears up as the doc has suggested.
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