Apparently no one is sure what is causing my pain. Had a cyst rremoved last november and the pain returned in feb. It got progessively worse month by month - only help was increasing pain killers - tramadol, co-codamol, ibruprofen and finally morphine in hospital.
Saw consultant and was put on Zoladex.
Hi, I was put on prostap, which is very similar, as they didn't know what was causing my pain. The consultant said that if the pain disappeared it was related to my cycle and if it didn't it wasn't. Not all of the pain disappeared so I was told I couldn't have endo. However when my last lap was done they found the endo. I have read a lot about people being told they can't have endo if prostap doesn't work, but this isn't the case! Hope you find the answers you need x
Thank you.
I have been told I don't have endo and this is the last thing they will do for me. After this my diagnosis will be CPP. Am annoyed as not had the alledged "extensive investigations" that has been stated. I was hopitalised with a cyst last year and have had one ultrasound since (when they couldn't see ovary) - this was an emergency and was disgnosed with a UTI though urine clear. The last A+E visit was for pain relief (morphine) other than this not sure what they mean. Just want my life back. :o(
Hi, have you had a laparoscopy to definitely rule out endo? I had 3 laparoscopies and was told I didn't have it after the first two then it was found on the third one. I too was at the point of being told I am a mystery and sometimes they just don't know what is wrong! I still have chronic pain bit at least I have some idea of what is going on, not having a diagnosis is awful. I would ask GP for a second opinion with a completely different hospital, preferably one with an endo specialist. I really hope you find a diagnosis soon, I know how horrible it is x
Had one in 2006 that said no evidence of endo seen. The one last november was to remove a cyst which they had to cut through adhesions to get to. This was a very quick one and I don't think they had time to look!
It was an emergency op due to acute pain.
Have you obtained copies of your medical records from these admissions ?
You may find these shed light on the matter and help you to pursue this
Just discharge letter.
Not sure what to do. Found out my local NHS has a pelvic pain clinic that I haven't been referred to. Went private and consultant was horrid. Feel so down and lost - pain has eased on Zoladex, but depression is making life as hard to deal with as the pain.
Am I mad for wanting to know what's wrong? It all started when I had a coil removed and got an infection last august followed by a cyst! But they seem to be fixated on twenty year old appendectomy problems!
Hi, does one have to pay to get this information if recent test
I would suggest contacting PALS at the hospital where you have been a patient to ask them to help you in how to about obtaining copies of the surgery reports : you could even ask for the appendectomy report. This procedure is known to be a cause of adhesions as are cysts and endometriosis. This could be adhesions which would also explain whey the ovary couldn't be seen on ultrasound.
Which is your local hospital that has a pelvic pain clinic ?
The east kent trust has one listed at all its sites according to the website.
I will look into the notes question - thankyou.
Had second implant yesterday. It has been working for pain relief, so happy! Though had a few twinges in last few days. But seems to be getting better again!
My GP said that they might be wrong regarding endo, but either way he is pleased it is working. I see my consultant in two weeks (private so easy to get appointments), hoping she will say that they will consider a permanent solution as zoladex has worked so well.
Glad you're getting relief. What permanent solution are you anticipating ?
Don't know really. Just hoping I suppose. Wishful thinking probably! A diagnosis would be nice if nothing else.
If you're thinking about a laparoscopy for diagnosis, it may be worth investigating operative laparoscopy ( sometimes called "see and treat " ) where areas of endometriosis are removed during the same procedure. However, many hospitals don't do this. Some surgeons doing this may prefer you to have stopped treatment for a few months so that any disease is more easily visible.
I don't know :o(
I have struggled through my second year of a degree either in pain or sedated on pain medication. Am due to go back in September for final year, but don't know whether I will.
Not sure I could cope with another year of not pain, stress and hopelessness!
Scared that the consultant will just say its in my head. Especially after a local GP told me I didn't have endo and he didn't know what I was worried about. Luckily he is not my normal GP, but it has upsett me some what!
GP's vary a lot in their knowledge, interest etc. What hospital are you at ?
At chaucer, had to go private. :o(
Off to see consultant tomorrow!
Very nervous - have a detailed pain diary and have armed hubby with info to support me!
Wish me luck as I think I need it, suffering from insomnia and nervousness again!
:o(
Still in same boat, been told to continue with treatment for a year and then decide what to do. Apparently its not worth looking into the reason for pain anymore. Am rather confused - happy that zoladex works but angry that no one will tell me what is wrong.
Have no where left to turn now - can't see much point to seeing anyone from the medical profession.
I went on Zoladex for 6 months as part of treatment for endo. I found after 6-8 weeks that there was a slow improvement in my conditions; pain and feeling of general ill health included GI and bowel problems. My migraines increased on this treatment although I didnt realise it was this that triggered them until I was in my last treatment. i did not have add back therapy, which I was later advised I should have received tibolone (not sure on spelling). This would have helped to avoid any bone loss and could have aided a further treatment of zoladex.
Good news is that by completing Zoladex, I was more confident in identifying exactly what part of pain and ill health was caused by the endo. I was able to identify the relief i received and then the return of conditions after stopping the Zoladex. Good tip to deal with the migraines. Try taking magnesium suppliments, no need to spend a fortune, tesco branded daily tablets will work.
Also, try taking spatone, iron suppliments, expensive but works immediately and does not cause constipation. To see if it works for you try it for about a week. If you dont see an improvement by then; ie more energy, needing less sleep, returning to the old you; then perhaps you dont need that extra boost of iron.
I cant vouch for the tibolone treatment, it may have eased the migraines, but I may not have been able to identify the exact differences in my condition. Another long shot ladies, is to try a dairy and gluten/wheat free diet for a number of weeks, try up-to 6 weeks, be strict, if it helps then you always have an alternative for approach to ease the anticipiated trouble on the approach to a period / during a period in an attempt to ease pain and bloating. If it makes no difference, then you havent lost anything.
I have found that physio, or even small stretching movements/exercise can help to ease symptons. Not all of them, but any little improvement is welcome. We are not talking about becoming a gymnast :o) we can all lean forward, sideways, backwards and stretch whilst our muscles are warm; after taking a warm bath or in bed.
The best part of this, is being able to identify exactly where your body is restricted in movement or hurts more according to what movement you do.
In hindsight it sounds easy; maybe it is just me, but when you are busy housework, work, kids and, go to the doctors and say, my back, pelvic, stomach, hip, bowels hurt they need to to know more details. I didnt know where to start.
I was referred to a rhematologist, gastroentroligist, Ear nose and throat specialist, physio, uroligist, and finally a gynocoligist. I have endometriosis, resulting in adhesions, IBS, hiatus hernia, Oesphagitis, shortened / scar muscles on the left hand side of my torso. I am feeling a lot better than I have done for the last seven years and am continuing to look for ways to help my body recover as much as possible.
I hope that maybe some part of this may help you, even if it is to know that you are not alone and there are a lot of people who can share their journey in the hope that you may find something to help you with yours.
Take care, best of luck :o)
Yes i have been given Zoladex to see if my pain is gynae related. I had a dermoid cyst removed in 2009 then gallbladder removed 2011. Now this and they are saying if Zolly doesn't work then going to be referred bowel and bladder route. On 2nd injection 3rd due next Monday pain is worse when sitting and laying had alot of diarrhea pain in hips thighs back pelvic area, i'm taking one day at a time.
Has anyone else suffered NERVE damage from a hysterectomy/surgery? 
Pain has been so bad I've been vomiting from it. 
Fibroids - Zoladex Success? UFE Feedback anyone?
PID? Anyone else share my experience? 
