To cut a long story short, I had my second op in January (laser treatment) removal of endo and scar tissue. Was put on prostap 13 months ago, and was told i would be able to come off it after surgery. So I did, end of jan. Since then, my pain has been getting worse, especially my lower back pain. I saw my consultant for the first time since the op on tuesday, he told me the pain is probably being caused by another problem, it cannot be the endo as I do not have my period back yet. He has referred me to a pain management clinic. I now feel like I have been left on the shelf again. My mobility has gone downhill rapidly, and I really dont know what to do anymore. Most days I just sit and cry. Has anyone got any advice? Or does anyone know of a REAL endo specialist in Glasgow.
PS I wont even go into the financial difficulties!lol
To my fellow endo sufferer...my heart goes out to you all!x
have you tried a different diet, my friend who is on here has said that she has felt a dramatic change cutting out wheat, dairy and generally eating healthly. she is fab and has also recommended a diary called the blue moon diary, it can help you record all of your symptoms and chart your pain etc. it can help during consultations if you can have as much info about your pain and how it changes throughout your cycle as possible when visiting the doctors. have you researched the gyno's at the hospitals to see if there is a specialist?
you have come to the right place for support and good advice, the comments i have seen from other people have been fab. i hope you feel better soon x
I used to make so many changes with diet, herbal stuff, accupuncture and just ended up being more unhappy when things still got worse and tiny amount of money I did have just went down drain.. Bringing diary and being nurse has always worked against me as I just got referred to psych services for being hypochondriac.. I guess I in my apathy stage! trying to feel better and not is just killing hope.. Peace and love to you x
Personally i think you have been unlucky and seen a consultant who does not sound like a real endo specialist. The guy I was lucky enough to see, who is one of the best, said laser treatment is so quick and easy to learn, which is why those who are not skilled at excision surgery which is more demanding, offer it so frequently.
It is ineffective longer term as it only removes seen patches of endo on the surface and not deep down or unseen endo. As my husband is a gardener, he explained it thus: Like a plant with roots - if you cut it down on the surface but dont dig the roots out, it will spring back again over time. With laser, it might not be able to come backin the same place as laser burns the surface and creates scar tissue but it certainly is possible for it to spring up again elsewhere if not eradicated at a deeper level if it was there.
This is why laser treatment often has initial comfort but, for many, it shows up again elsewhere. Sounds like your lady/guy is one of those who say it can't be endo again as they have removed it - yes but only from the surface of where it was. That does indicate they might not be a specialist endo surgeon but rather a general gynae with an interest in endo and not trained in excision surgery for endo. Did they offer you excision? It really does depend on who you see and their experience as to what you get offered.
I went from London to Yorkshire to see mine but you have to be in the NHS catchment area or go private to see him. I would think you would have an experienced endo consultant within your catchment area - alway best to see an endo consultant surgeon rather than general gynae unless endo really is their specialism.
All best wishes and I really hope you find the help you need. It is such a trauma trying to work through all that is offered. I remember my own journey at that time only too well. Since radical excision I have been back to normal for past 16 months now - every month is a bonus and I cross my fingers when I say I am ok now. I would do it again though. All keyhole.
hiya, I too suffered terrible lower back pain all month long, not just when i had my periods. Iwas beginning to miss periods due to the start of the menopause and still had terrible pain, it sounds to me like your doc doesn't know enough about it, i would be asking for a second opinion, this is your life!! I have stage 4 endo, spent 2 hours in surgery getting it cut away, didn't help with the pain so now I get the zoladex implants every 28 days and i take liviel hrt, pain free!!! This can be a temp thing and you can be any age to get it, worth looking into maybe. Best of luck and change your doc.
Some doctors can be very hard on women, I have suffered for years with endo wont bore with detail but overs years been told by gp to stop fussing nothing wrong with me,then told own fault for not having Mirina coil fitted ( hospital tried but too painful to insert),told it was just a bit stress and even constipation. Ended up dangerously depressed,please write all your aches,pains and feelings down and insist on seeing another GP .. Good Luck .
Sorry for the late reply, just had a rough few days... I can't thank you all enough for your wonderful advice and support. I felt I was going insane. Sadly I don't think there is a proper endo specialist in Glasgow, within the NHS, but I will still try to get a second opinion and take it from there. I am already trying various diets, they do give me some relief, but not enough to be able to start living life again. I have been given anti depressants by my GP because, apparently that will solve everything. What a joke!
This is the first time in a very long time I have not felt alone, you laddies truly are wonderful. THANK YOU!!!
I also live in Glasgow I'm stage 4 with bowel and digestive problems x no 1 is willing to help me itheir x specialist said they won't touch me till I basically fall over in heap x it's a joke GP A&E specialist not got a clue past fae piler 2 post x I'm bed bound for weeks at a time as I bleed constantly it's so draining x nothing stops it x gd luck an hope u get sum1 to help you xxx
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don't know what to do
I don't know what else to do :( advice on BSGE clinic 
Confused and don't know what to do!
