How long between first visit with gynae and treatment ??

[Emz1978]

Hi, after years of increasingly painful periods and a raised CA125 (71) result, I had a scan a month ago which found a large cyst on each ovary and signs of extensive endometriosis. The sonographer said it was clear i'd had it for a while and I know that one of my fallopian tubes is involved.

I am in constant pain and it is making me so miserable. I can't sleep because the pain wakes me every night (abdomen and back pain), and i am taking painkillers like sweets. The pain when I have a period is just awful (ended up in a&e last month) and i'm yet to find a medication that works.

I finally have an appointment with a gynea on 26th Feb, but would like to hear from others how long they waited between their first appointment and anything being done ?? xx

[Impatient]

I you have not yet been diagnosed by the endo actually being seen during a lap op - and with a cyst and raised CA125 - you will be on fast track now.

Got to be seen by a surgeon as if you were a potential cancer patient.

Once you see the surgeon then surgery is within 2-3 weeks after the meeting depending on when they can fit you in to their schedule. It should not be any longer than that - there are NHS guidelines for maximum waiting for ops with anyone who may possibly remotely have cancer. This is a saving grace for us endo ladies in the begining - unfortunately once we do have an endo diagnosis proper - any subsequent surgeries are all under the endo banner and the waiting lists are a LOT longer.

It is a really good thing to be fast tracked and get seen to and hopefully relieved of the pains you are currently suffering.

My situation was smilar to yours - not yet diagnosed endo - raised CA125 and cysts.

Surgeon saw me on my birthday and the friday of 3rd week after that, i had my op.

The week before the op i had my pre-op discussion with the staff nurse, and the night before the op i attended hosp to have a clexane injection in the thigh.

(to thin the blood and prevent a DVT)

Even though looking back it was very quick - it didn't seem so at the time because one of my cysts was by then a very angry beast and causing me a lot of pain constantly.

Compared with how long already diagnosed endo ladies end up waiting for cyst ops these days (sometimes months) being on fast track has to be seen as the ideal scenario for getting the pain tackled. Please do not concern yourself with this being OC -

OC is much rarer - it generally speaking only manifests itself in post menopausal women whereas if you ar still having periods and are pre or peri menopausal - in almost all cases it turns out to be endo.

I found volatrol /diclofenac really helped keep my pain at manageable levels while i was awaiting surgery, though these days they are doling out Naproxen as a safer alternative. I was still in pain - don't get me wrong i wasn't leaping around like a sping lamb - but it did take the edge off the pain and allowed me to sleep.

Yo do have to keep on top of the pain meds NEVER let them run out before topping up the dose. You can vary the types of pain relief you take to avoid overdosing on any one type within a 24 hour period.

You should expect your op before the 19th March at the latest.

My invite for a pre-op came in the post at very short notice. I was not given the actual op date till after the pre-op.

If you don't hear from the surgeon by 16th March get back on the phone to the gynae department and chase it up.

[Emz1978]

Thanks

Not yet been diagnosed via lap no. No one has told me i am on fast track. I got referred and then had a letter to choose and book my appointment, which was 3 weeks away at time of booking.

Painkillers I have tried are Naproxen, Tramadol, Co-codamol and then just ibuprofen and paracetamol. Tramadol does nothing at all, and naproxen only seems to work sometimes and not others.

I think if it weren't affecting my sleep so much i'd be able to cope so much better. The past 3 nights I have ended up having a bath in the early hours to try and relieve the pain. Last night I went to bed at 11, woke at 1:45 in pain and haven't been back to sleep since. Only good thing about that is that I googled and found this site

I am scared to death of my next period, especially as a&e did nothing for me last time I went.

[Jem75]

I had a nearly identical experience. Please get referred to a bsge accredited centre ASAP by gp thru choose and book. Uchl brilliant X X x

[Bokkie]

Hi. After years of heavy periods and pain my GP eventually decided to do a blood test and it was discovered that I had a raised CA125 (over 100). This reading went up and down constantly for at least 6 months. Endo was never mentioned once. I was told that my CA125 reading wasn't 'high enough' to be anything serious. Eventually I was given an internal scan. The internal scan showed up a dark shadow on one of my ovaries. I was fast tracked and saw a Consultant at the hospital within a week as suspected ovarian cancer. Had lap within 2 weeks and was diagnosed with stage 4 Endo. The shadow was a blood filled cyst. From my personal experience, I have come to the conclusion that the only way to get seen quickly by a consultant is to have a raised CA125 and an internal scan that shows irregularities. Like Impatient has already said; you are definitely fast tracked if they suspect cancer. X

[Impatient]

The fact you got your gynae appointment through so fast is enough to show you are being fast tracked, even if no one mentioned it before. Ordinarily you could have a 2 -3 month or more wait to see a gynaecologist.

And as Jem says getting seen by an endo specialist is the ideal - but when you are in pain and the cysts is the reason for the pain at present, then it really is better that someone even a general gynaecologist deals with that angry cyst asap. They can tackle any shallow easy to get at endo and they can also map out the locations where it may be beyond their expertise to operate in which case you my need a follow up op again in the not to distant future by specialists in endo.

First things first - have this op as soon as you can get it.

[Emz1978]

Thanks for all of the replies, they are so helpful. Looks like I am lucky to have an appointment so soon then, kind of.

I just want it all to go away, which I am sure everyone does. I only had 3 hours sleep last night, which is becoming common. Have tried to stay off the painkillers today because I was feeling a bit sick. Have been permanently stuck to my hot water bottle and tryin g to keep myself busy.

I'm really worried that whatever they do won't work, which I know is really pessamistic, but it's hard to be positive atm.

Given the choice i'd have the whole lot taken out, womb and everything, although I know thats not always a cure either.

It's a good job I don't work atm.

[Emz1978]

Just thought i'd update on how my appointment went today.

I saw a doctor who explained that I have a 4cm choc cyst on my right ovary, and a 7cm mass on my left ovary which coveres the ovary, fallopian tube and pretty much everything on that side. They said that they think it is still only a choc cyst but are going to recheck my ca125 levels to see if there has been a rise at all and if so I might have an mri.

I then saw the top bloke there who explained it all again and the upshot is, that I am being placed on his list for a laparoscopy. However, as he is the top bloke, i won't have it until September. I was unsure wether to accept that at first as he said I could have it done a little sooner with a more junior doc, but I really wanted the top bloke to do it.

So I am going to let him do it, and in the meantime I am being started on Prostap injections. I will have 4, and then a 2mth break before the surgery.

The consultant said that they will remove as much endo as they can safely do so, and the small cysts on the right side. They would prefer to keep my right ovary but have said they will take it if they think they need to, and I told them I am more than happy for them to do that.

Wrt my left side, I will more than likely lose the ovary and the tube.

Overall I was very pleased with how it went, and i'm glad I chose the hospital I did instead of my nearest one.

All I need to do now is try and get my gp to give me morphine for when i come on my period next week, and then I will have 4mths period free

It would be nice to hear from anyone who has had prostap so I know what to expect.

Thanks x