You arenāt imagining any of it, unfortunately. Sorry itās taken you so long. The Endo uk site has some great info, webinars and pain diary. Donāt let anyone say itās in your head.
What has GP given you for pain?
Glad youāve recognised that you only feel down because of the pain and not general anxiety, easy to get mixed sometimes.
Not sure how long appointments are taking for Gynae, if you can afford it you could go for a private consultation, choose a specialist who does NHS as well as itās possible to transfer to their NHS list.
Thank you SO much! You're the first person in ANY forum that has responded and helped me.
I have got a really good pain app that has been helping me log every day. GP has given me some Tranexamic Acid I believe for when I have my period to lighten my flow and I have strong codeine already for my back pain but it's just constantly making me exhausted.
I just feel so drained with it all. And I just want an answer. I've been going through Dr's for years trying to get them to look into me having PCOS but they just ignored me and now to find out it may be endometriosis has thrown me off entirely. I'm just so stressed out.
Thank you for answering me - you've made me feel like it is real. š
Glad GP is sort of helping š a pain nurse told me Tramadol was better than codeine for endometriosis. I did try it for a while, sort of helped. Iāve probably tried most things, including Nefopam which is non opiate, Diclofenac (still use occasionally), currently take Duloxitine for nerve pain (itās better than Amitriptyline) and Oramorph as well as paracetamol. Oramorph is really good when the pain picks up a bit.
Fatigue is all part of it, surprising how tired you can feel, try not to get too stressed over it, not easy I know. Keep in mind youāre getting closer to getting answers now and hopefully some decent help š this forum is pretty good.
Feel free to ask anything, if I can help I will š
No itās not all in your head at all and donāt let them tell you it is. I was fobbed off with IBS for many many years as I also suffered with horrendous constipation which was all to do with the endo š¤¦āāļø I was diagnosed with stage 4 endo and suffered exactly the same areas as you do. Was all in my right lower abdomen, hip, groin, and also suffered down my legs and my back (on the right side). Ovulation pain was the worst. As on time I think it can all depend on your area. My first gynea appointment I waited 9 months for, then a further 3 for a diagnosis laparoscopy. I was then referred to a endo specialist to have it all removed at a different hospital and waited 2 years for that surgery which I had last month š¤¦āāļøš¤¦āāļø Iām West Sussex based xx
Wow that's a long wait! For the amount of pain we deal with! I'm so glad you got somewhere in the end though mate! Thank you so much for sharing with me.
My ovulation pain is so bad I just constantly have burns all over my right stomach. Xx
The other ladies have given great advice and my one add on would be donāt let them fob you off as endo grows and can get worse.
I was back and forth to my GP for 12 years to actually end up with a pain prescription that said āfor unexplained abdominal painā. It is so disheartening but itās not in your head. I feel your pain I thought I had lost the plot. I now have a diagnosis of grade 4 endo, adeno, all gynae organs stuck together and now getting a full hysterectomy/oopherectomy, excision of endo and bowel shave and Iām only 39. Other ladies have had this done earlier and are worse off than me I just feel too young yet.
I feel like if I had known about endo years ago I would not be in this state now. I feel failed by the medical professionals that saw me over the years who made me feel crazy and I wish I had advocated for myself better.
Your symptoms are similar to what I have had over the years but now mine is advanced itās so much more severe and they only took me seriously when my period changed last year, I had a raised CA125 blood test and general sonographer found one cyst on ultrasound. So I was seen in general gynae within the 2 week cancer pathway.
Thatās another point if the sonographer is not trained to spot endo they can miss it. Mine certainly did as I was already at the stage of bilateral endometriomas, ovaries stuck to uterus and all that stuck to my bowel yet all they reported was the one mass on one ovary. No idea how they could miss all that.
Anyway best of luck, arm yourself with as much info as you can and be prepared to speak up for yourself at every opportunity.
Agreed, yes why after years of pain, does it take the 2 week pathway and stress of a cancer scare to find out that all your insides are stuck together? Unbelievable isnāt it! How many thousands of us every year I wonder?
They didnāt even tell me it was a cancer scare either I found this out when I requested my medical notes and MRIās so very scary what goes on behind the scenes or in some cases doesnāt!
Iām extremely lucky as Iām at a BSGE centre now but if it wasnāt for this and a Facebook group Iām on I would still be flailing around wondering what I should do.
So glad youāre at a proper centre, my op was by the oncologist, she was lovely surgeon but they werenāt prepared for the extent of the endo and focused on biopsies so I had half an op! I think the 2 week wait has targets, which speeds things up but not always in the right way, whereas getting the correct treatment is more important in the end.
Youāre welcome this and the Facebook group made me feel not alone as well.
Itās called Endometriosis Guidance and Information Resource UK (EndoRevisited) you have to be accepted but once youāre on they are brilliant and directing you to the correct treatment pathways, identifying with symptoms etc. itās not a support group but it has such valuable info. The ladies that run it have so much knowledge itās incredible.
Maybe you should reach out to your GP or someone you trust so you get some emotional support. My family have been amazing I couldnāt do it without them even though I know they donāt really understand. I think Iāll need some additional emotional suppoirt after my surgery so I get how you feel.
Message me on here anytime itās such a lonely condition but youāre not alone.
Hi, it may take ages to get an appointment, some people are waiting over a year for an appointment and then you may have to wait longer for an operation. However, there are some things that you can do for yourself. The pain down the leg implies that lumber 4/5 is out and putting pressure on your nerve. This happens because the inflammation caused by endometriosis pulls on a ligament which puts your back out, a good chiropractor (trained at Bournemouth) will help. Additionally you can is try changing your diet, may endo sufferers get some relief with their symptoms by avoiding wheat and gluten from your diet, others from avoiding bovine dairy - some of course need to avoid both. Just try it for six weeks and see the results. There are supplements that can help but you could read Dian Shepperson Mills book āEndometriosis: a key to healing and fertility through nutritionā. endometriosis.co.uk/
Hun for me to be referred to gynea fast track I think is about three month wait ? I think thatās how much I waited after I had scans and things and numerous times in a and e xxx but for my operation like diagnostic was told it was two years or more but because I was going to do a trial would have been sooner. But fast forward to this year my doctor fast tracked for the operation as was bleeding heavily on the coil and pain so intense that I couldnāt walk. Xx I hope you get the answers you need hun.
I did also have adjustment s at chiropractor but the pain was so intense I had to stop going . Pain wise meds am on amitriptiline was on duloextine but was getting restless legs as I take other psychiatric medication. Was on pregabalin but that made me fall.
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