Went to the scan yesterday, and it went well. The radiologist did an external ultrasound thought that i had a fybroid cyst, but after an internal ultrasound turned out to be a bit of bowel that had slipped (but that wasnt the cause of the pain).
I then got shown through to the Gynae Clinic where i was spoken to by the collegue of the Dr i saw on Saturday (the one with a heart of gold). She was nothing if not disheartening. She said that "we do not know the cause of your pain and since the scan was clear we are even more unlikely to know whats going on". She then proceeded to tell me i would have to try the coil for 6months until i would know whether it would work for me (even though i know it takes around a couple weeks or so for it to kick in properly). AND then proceeded further to say "even if the coild doesnt work you will probably have to suffer this until we find a contraception thats best for you".....
What the hell is going on at the NHS??? I was told to try the coil for a month or so and if i was still sore then they would consider seeing me at the out patients clinic for further discussion of a possible laparoscopy... Not "suffer until we find a contraception thats better" she even had the cheek to say that even if my bleeding doesnt stop the pain will go as the coil may help with "period cramps".. ITS NOT PERIOD CRAMPS YOU STUPID DOCTOR!!! A period doesn't last every day for months! And surely the bleeding is what makes the pain worse? (from what i've read about Endo it seems that way)...
UGGHHHHH..... Want to seriously go private but unfortunately i dont have the money for that..
I wonder if i should write to Nicola Sturgeon cos i really feel like the hospital is not taking me seriously majority of the time.
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Omorose
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hi hun im sorry you are so frustrated how long have you had the pain dosent seem like for that long and i dont mean this to sound in anyway condersending as i know the pain as we all do all to well the doctors dont understand but also there is no cure so is just trying things and seeing what works best for you the chances are you will have to deal with this for a long time reality is it might not go one medication might stop the bleeding but you will still be in pain and another may stop the pain but you might be bleeding alot i have been in pain every day for 6 yrs and just had the coil done as last resort as have tried everything now they dont have the answers it is a horrible disease and effects you mentally and physically as i have found that because of the swelling due to the pain i dont like going out that much as people ask me if i am pregnant and wen i am due which i laugh about it but it kills me inside and also youi dont want to go out because you dont know what will happen and you dont want to be far from loo i am popping painkillers like smarties just to do what a normal mother and wife does i would love to say it gets better and easier but reality is it sucks to have this and if you are lucky which i hope you are you will find a treatment that will ease it all for you but laproscopy is not always the best way as i have scars now and thought it would be all over but 2 months after they lasered it off it was back with a vengence i hope this dosent sound to awful or hugely negative but it is better for you to realise this sooner rather than later hope it all works out for you and you can get a treatment that suits you and be one of the lucky ones feel better hun xxxx
Unfortunately, regardless of how much the symptoms are pointing towards endometriosis, the only way anybody can definitively diagnose it is via laparoscopy. And before they even consider that they want to try everything else that could control the symptoms non-invasively. If you DO have endometriosis, in many ways surgery is the worst thing for it, particularly if it's raging out of control; endometriosis loves the scar tissue that forms every time anybody has any kind of surgical procedure, and every op to make things 'better' in fact has the potential to make things worse in the long term.
I know that when you've been in pain for all that time and you're at the end of your rope, you need answers NOW, and I understand why you feel you're not being taken seriously. But in fact it does sound as if the doctors are on the 'endo trail' now. If they didn't spot any ovarian cysts on the scan that are likely to burst in the near future, they won't be in any hurry to get in there until they've tried other ways of getting things under control. And that means hormone treatments, like the coil (which incidentally can take up to six months to settle) and then maybe Zoladex or Prostap or other hormone treatments that would be more suitable for you.
If you're not happy to wait, then go back to your GP and ask for a referral back to out patients so that you can talk about laparoscopy. But bear in mind that before they do the op, they often give you drugs to shrink anything that might be in there first. Which is kind of what they're offering to do now anyway...
I'm probably biased because my experience with endo and the NHS has been nothing short of brilliant. But then I've had 20 years of this now so I've come to learn when something's really wrong as opposed to it being 'just' endometriosis.
wow, you should not have to wait that long for a laparoscopy. I would print off a list of endometriosis symptoms and really.... If you want a laparoscopy they should give you one. If your GP is not referring you then perhaps switch to a new GP surgery in your area. Its the manager of the practice which controls the purse strings and surgery is expensive... my own GP gave me a really difficult time when I was after a diagnosis.
It was suspected even when i was younger but i was on the pill so the pain wasn't too bad so I didnt have a laparoscopy but more recently I had more and more pain to the point where it was affecting my ability to work etc so i got referred to have an ultrasound, they found a lump or two so I was scheduled for a hysteroscopy then they found nothing so i went back to the GP as the surgeon told me i needed to get myself re-referred for the laparoscopy but that was the next stage if they found nothing.
The GP was rubbish, he said "there is not evidence that you have endometriosis so i dont see why I should refer you" my boyfriend cringed as he knew how angry I would be. I have done my research and with a background in healthcare and biology I was not just misreading things....
I said "what?! I have all the symptoms, AND a family history. My mother was diagnosed with it at the same age"
he said "oh does it run in families" ...... UGH!!!
I said "...... yes, it does.... could you just refer me to a gynaecologist so i can get a professional opinion on this"
he said "so you want the laparoscopy"
i said "yes"
I got the lap, i did have endometriosis AND i got an apology from a female doctor at the practice.
Ugh sorry to hear you've had similar difficulties to me with GPs... i'm only in the catchment area for 1 GP in my area unfortunately.. So i'm stuck with them.
If only i could bring you with me and help me verbally battle my Gps hehe.
I have asked for a referall for a laparoscopy 3 times but tey are suggesting i go on the coil (which i do not want to do as i do not want that kind of contraception). I would rather get the laparoscopy and be done with all the confusion from doctor to doctor of "yes you do have it" to "no you don't have it"... Tired of hospital ping pong... in the last 2 years due to pain (which since i was 14 and hit puberty i had pain, but not as bad as the last 2 years believe me) i have had over 130 trips to a&e or outpatients appointments at the out of hours gp. only a quarter of which i was admitted and helped with my pain until they decided (even if i was still in agony) to send me home.
I just want it all to be over with so i can play with my daughter and not be sore anymore as it makes me feel like a failure as a mum.
Thank you for the link. Much appreciated! *hugs* xxx
if you have presented at a&e that many times maybe it would be cheaper from their point of view to just do the laparoscopy... if you have exhausted your options then perhaps it is time to consider approaching a local complaints group for the nhs
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