If I thought I was confused in January...

[komeara]

Hi ladies,

My first blog here where I got some great advice was in the lead up to the appointment I just had, and working out whether what I had sounded like endo and was worth investigating - or whether to move to another consultant, or what to do.

Starting last Feb, I had a cyst which ruptured and ended up in A&E. They thought it was appendicitis because of the blood in my abdomen, but once they investigated they discovered a ruptured cyst which had healed itself so left it to dissolve.

From then, I expected to feel a bit of discomfort as everything settled down but the pains I had after really continued and evolved a bit to the point over a year on, I'm still in pain. Back, legs, hip/ovary area, every month and although there's been a change, I have had a fairly heavy but steady 5 day period over the past 5-6 cycles aswell, now its 9 days, more clots, brown blood at the end and change in the days where there's pain (sorry if TMI). We've also been TTC for almost 7 years with no luck.

Anyway, up until last year they suspected I still had the cyst and scans in Dec showed 2 x others on my right ovary (the one with the original cyst and more pain around) and follicles all over my left. I thought this explained it a bit but apparently the cysts are normal ones so it doesn't. Even though the consultant knew I was in pain, he was willing to discharge me until I asked to better understand why these cysts were normal (originally they said nothing showed up but the dr doing the scans told me what was there when doing) and he said the only thing he would suggest would be to investigate endometriosis.

Which is where I found this site and a great amount of information. I didn't want to undergo a lap if it wasn't likely, based on experiences, that this was what it was but found lots of advice so said yes and had an appointment last Thursday to start the process.

Last week took the wind out my sails I suppose. Nothing went how I expected. I went in, he seemed to forget he'd suggested it. So I said why I was there and then he found my notes from the laparoscopy in Feb 2012 (a year before) and said endometriosis was checked for then and there was nothing. He said although people can make mistakes, he would trust the lady who did it.

I couldn't believe the time wasted really. In Jan when he said we could start the investigation process, those notes were available. I had everything ready, cycle dates, pain dates, pain types - everything ready to hand to start afresh but he wasn't interested and swept the cycle stuff aside in relation to the TTC stuff and said he's 'not worried about a few changes'.

He's offered me an injection. He didn't say what it was (I found out yesterday via his secretary its GNRH analogue) or any risks/side effects etc, but basically it would stop the ovaries working to work out if it's an ovary or a bowel problem. I'm certain it's ovary because it's cyclical so out of his 4 options:

1) pain management

2) injection

3) laparoscopy although he didn't think the person before missed anything - I did ask re looking around everywhere, could it have been under any organs etc

4) discharge and go back as a TTC clinic patient and he'd check tubes and lap at the same time

I opted for the injection, hence the call yesterday but his secretary can't read his notes so I have to wait until Thursday, incase a registrar can, or 2 1/2 weeks, when he's back. I googled what she said she couldn't understand and it relates to having the ovary out, if the pain does go and it can be worked out to be an ovary problem.

I'm so gutted and I think it's worse because I thought, not that it was necessarily, endo, but that it was the beginning of the end of actually knowing what was going on, and it's not. Plus this month's pain is the worst, it seems to get worse every other month so I'm waiting for that.

After all of that, I feel like I don't really belong here but feel like you would have a better understanding of the whole drawn out process in finding out what's wrong.

My consultant is at Kings Mill in Mansfield, he also practices privately and has had his name in features in the Daily Mail etc. He apparently has a specialist interest in endo, infertility, new treatments etc and I think he's the clinic head.

Has anyone else here had any similar experiences? Any advice would be appreciated.

If anyone's made there way through all of that, thank you for reading. I'm a bit down with it all, teary as is the time of the month sequence, but thank you.

x

[Impatient]

There is no point having GnRH if you do not have endometriosis.

So either he does think you do or he doesn't.

GnRH are cancer hormone treatments, if you are TTC then no point gooing down the GnRH road, as that takes a year out of your life before TTC again, and it doesn't improve fertility if anything it risks it being damaged. Nor will it cure endo, but if you do have endo it can relieve endo pain but at the price of having other side effects not least of which is it is highly toxic to a developing baby if you accidentally get pregnant. So that must be avoided on the drugs by using condoms at all times and for 4 months after the last implant. Or abstaining, which is probably what you feel better suits you anyway as you are chemically castrated by the drug.

Not ideal if having a baby is on the horizon.

It doesn't actually matter which of the GnRH drugs your are being offered they all have the same issues when it comes to toxicity and pregnancy.

In the UK, the main one is Zoladex (Goserelin) , then Decapeptyl and also Prostap (much more commonly and notoriously called Lupron in the rest of the world). There are others.

Even in endo ladies where it is taken with the hope it offers pain reduction, then the correct pain killers will also give you pain relief without the complications and risks of GnRH drugs.

Visit the Lupronvictims hub for all the latest news on the GnRH drugs, and decide for yourself if it really is worth going down that road when you're intending to TTC soon anyway.

Even if you just have 1 implant for 1 month to see if it makes any difference -it is 5 months before you can practise unsafe sex to TTC.

Getting pregnant would potentially give you at least 9 months break from endo. whereas GnRH is 6 months max. So getting pregnant if that is what you are intending to do, is actually much better for you and your endo in the long term, health wise.

I'd advise stick to pain management and TTC, rather than the GnRH route. If you do have endo, a pregnancy will help much more than drugs will.

[rashidaakoonjee in reply to Impatient]

hi impatient u gv da bes advice wth stella.mine is on rectum wall cnt painkillers animor 6yrs.n imfed up.goin fr op in may .scared of colostomy bag.bt gynae said hel try n shave n do hes best.

[tortoiseshell]

Hi, I'm reluctant to go against your doctors advise but if it were me I'd want more tests done before I went for the strong hormones. Ask him why he thinks this is the best way to go.

Also I feel I basin a similar position to you because my first lap showed nothing unusual. Now though (2 years) later I have had another lap that shows adenomyosis. This is very difficult to diagnose apparently. I would ask for an mri and ask them to rule that out one way or another..

Adenomyosis is like endometriosis but of the uterus- the muscle wall or myometrium becomes I.infiltrated with endo lesions. Causes the same symptoms bit is more commonly found in women that have had kids.

I haven't had kids. There are new treatments becoming available for this condition.

Hope this helps somewhat,

Best wishes for your health and push for more info if your not ok with what they say

H

[lillyflower]

Hi, id only been thinking of you a couple of days ago wondering how you were! You must feel very confused by it all but if it was me I wouldn't take the hormone drugs knowing you want to try for a baby and it will stop this being possible. I had the dye and lap and now know my tubes are bloked so IVF will be only option. I know the pain is bad but if you want to try and conceive can you ask for a lap and dye for this reason and at least if they check everything again and being over a year later things could have changed. Endenomyosis is also worth asking them to check as sugested above. So personally I wouldn't agree to those drugs until I knew what the cause was, but you have to decide what your happy with this is just my thoughts and I know they have helped many but if he really believes its not endo seems strange to suggest them.

Just because they didn't see it last time you are still suffering same pains and feelings as many of us on here so keep chatting as sharing has helped me cope with it all.

[komeara]

Hi ladies,

Thanks for all of your comments and advice. I have a call booked with my dr on Friday, although I did speak to her last week she was reluctant to advise saying the consultant was far better placed than her, but I now know more in terms of the name of the injection so maybe she can suggest differently.

I feel like I was a bit blindsided last week so totally unprepared for what to ask, I feel the consultant should have better explained everything because I had no idea that the injection was quite so long term, in terms of ongoing affects, rather than a tool to diagnose almost.

Thanks again for reading the essay, I'm hoping on Friday I'll have a clearer picture on what/who moving forward.

x

[komeara]

Hi ladies,

A year later and I'm not much further forward to be honest and again I'm asking and hoping you can maybe give a little advice on moving forward.

I went down the TTC and pain management route a year ago but tbh I didn't take a lot all the time, only when it got particularly uncomfortable because I work for myself the knocked out drained feeling was sometimes worse than having a clear head and just trying to deal with it.

In the TTC plan, the consultant wanted to check my tubes so I just had (mid-March) a laparoscopy and combined the investigation for endo, which I was already told was what the consultant wanted to check for, but didn't think it would be present, and a dye test for my tubes.

The end result was no endo as expected, and one tube was stuck so was freed up (left side) and the right tube basically isn't formed, so the dye couldn't be put in because the tube part wasn't there to see if it would go through.

I've stayed off here for a year mainly because I didn't know what to do and if it wasn't endo I didn't want to feel like a fraud being on here if that makes any sense.

The consultant left it that I'd be having a post op scan on my kidneys (which after following up for the appointment day/time I'm told has been cancelled and leaves me confused as to why) and I have an appointment mid-May with the consultant about the results, but basically left after the operation as they want the appointment to be about IVF.

I'm now unsure what to do now or how to proceed and so knowing so many people on here have much better advice than most I'm hoping for any advice anyone can give please (and sorry again for the essay).

A smear test a few weeks ago, two weeks before the lap, was so uncomfortable, I was barely able to walk two hours before the appointment without being hunched over - but the smear test itself had to be stopped because the pain was unbearable - unusual for me because it's not the most comfortable of things, but it's never like this.

I had to go to the nurses to get my stitches out and said I was thinking about waiting until the pain was really bad on a particular day and booking an appointment on that day so the dr has a chance to maybe see something that wouldn't be seen otherwise.

Does this sound like a way to re-start things and maybe get my dr - who is very good - looking at different things?

Thanks again - and sorry for the essay. Hope you had a cuppa to hand to get through it