Where do I go from here?

[Sara-x]

After 5 years I eventually got a date for a laproscopy which I had done on Monday!

However, even with every symptom pointing towards endometriosis and so many doctors saying that it probably is endo, I have been told that everything is completely clear..

I have no idea where to go from here as I have absolutely no faith in the specialist that I saw as he was reluctant to investigate anyway, as for years he just said that I was probably still just "growing up" (I'm 21). I have been in so much pain since having the laproscopy and had to spend the night of the operation in A&E as the single stitch they put in came loose and got lost, leaving an open wound for hours.

After the operation, it even took some persuasion just to get him to talk to me over the phone about what he did or didn't find as he said he spoke to me when I came round from the anaesthetic, almost surprised that I didn't remember anything he had said!

I now have absolutely no idea where to go from here as he's basically said its just functional pain and that I simply have to find ways of managing it.. Yet he said to think myself lucky!

I know that other people have been left in situations like this, what did you do next?

[dawntildusk]

I really feel for u sara. I had a similar experience myself if u read my posts. its been a long road but hopefully now i am seeing an endo specialist I am on the right track to getting sorted in some way. my op was done by a general gynae and I assumed that this was the right person however since then I have learned that it is essential to be seen by a bsge approved specialist in order to receive the correct/thorough treatment. always insist on seeing the consultant too and not any juniors. trust your instincts and if need be ask for a second opinion preferably at one of the bsge centres. x

[Sara-x in reply to dawntildusk]

Thankyou for the reply, I will have a look into a bsge centre.

I'm just worried that if I keep looking into this then people are going to start thinking that I want something to be wrong as I've been told I'm clear, which isn't the case at all! I just want answers as I know that what's happening isnt normal!

[dawntildusk in reply to Sara-x]

I felt exactly the same. have u had any scans? if things arent right im afraid u have to be persistent. I too thought may be I should just accept things but my symptoms just got worse. you/we are still too young to have to live a life like this!!

[Sara-x in reply to dawntildusk]

I've only had 2 ultrasounds, which I dont think would find anything anyway. And then I've had a laparoscopy in the last few days. But it took a serious effort just to get an ultrasound never mind anything else!

[dawntildusk in reply to Sara-x]

I had internal and external ultrasounds. external didnt show anything however internal showed endometrioma on ovary. had lap to remove it only to be told there was nothing there. a few weeks later the scans were repeated and low and behold it was still there. ive since been told that it is likely that it was missed during surgery as they do not spontaneously disappear. I am just awaiting a mri at the mo to see what that shows before I potentially have to have the same op all over again!! if your symptoms are bad please dont give up.

[Sara-x in reply to dawntildusk]

Sounds like you have had a really bad time of this. When I've recovered from this op im gonna have to try and get a second opinion. I have an appointment with my current gynae in 6 weeks but i know he's not going to have any decent answers or options!

[dawntildusk in reply to Sara-x]

good luck. I hope your recovery goes well and remember to take it easy!!!! x x

[Sara-x in reply to dawntildusk]

Thank you, hope you get your answers too x

[AC39]

Sara - don't worry about what people will think - and in my experience it's not what they are thinking anyway. My first lap 17 years ago I was told I had nothing by a gynae - two years later with Endo specialist has another lap and was severe Endo with a difficult surgery. 15?years later I am still with the exact same Endo as they just left me on hormones for 12 years in a menopause (as it managed my pain) but I couldn't stay on them forever so now off them and still have the pain and the most difficult Endo to remove surgically. Keep going, find a centre and see an Endo specialist - you have a right to ask to see one - my GP referred me to a specialist when first lap was negative and that was 15 years ago so they can't refuse - you just have to kick up a fuss and know your rights. Good luck

[Sara-x in reply to AC39]

It sounds like you've had a really horrible time with this I've been worried as for almost 2 years before they finally did the lap, I was put on prostap and HRT. I kind of felt that all that was going to do was hide the problem rather than treat anything and now there's mention of being put back on a similar thing for even longer which I really don't want to do as there can be so many side effects and extra problems caused from it! Just seems like when it comes to this, not many people seem to know what they are talking about and don't understand how much it can affect your life!

[Hey_Becks]

Hi Sara,

Firstly don't let anyone tell you that the pain isn't there or down play what you feel. I had several scans, 2 laproscopys, my appendix removed and saw 3 different Doctors and 2 Gynies before I finally got a diagnosis. It took 7 years! I am 24 now and have endo on both ovaries and uterus and I'm facing some big decisions about whether I should TTC now.

The only thing I can say is to be persistent! I ended up in the hospital A &E ward several times from the pain and being doubled over. Sooner or later they HAVE to look into it further. The surgeon who finally diagnosed me was brilliant and I did some research into specialists in my area and requested to see him. You could also pay for 1 private appointment for their advice and see if you can get another opinion.

The pain you describe is not normal and many genius and docs told me I was 'too young' to have endo which is ridiculous because as long as you can menstruate you can have endo!

Good luck, stay positive and persistent!

xx

[Sara-x in reply to Hey_Becks]

All of that sounds so similar to me!

I have been in and out of A&E just because of the pain and I'm starting to feel like it's all in my head. Every time I have to do something about it I feel like im a nuisance or feel like they don't believe me. I've had so many doctors tell me that I have to take pregnancy tests or that I have an STI and it's got to the point that I'm just wasting my own time and theirs by doing these tests even though I know that every time they're going to come back with nothing!

Even the countless GP's I've seen have all been useless. I feel like I'm just being pushed around in circles by too many people who don't know what they're doing!!

[Hey_Becks in reply to Sara-x]

I'm sorry that you are going through this too, this is exactly what happened to me and a friend of mine who has endo and PCO. Have you been with your GP for a long time? Maybe you can do a little digging for specialists. I can't give the name of my surgeon but he specialises in pelvic pain and was the one who told me that 'being too young' is a lie! Please don't give up, I know how debilitating it can be and you feel like no one quite believes that horrible pain or its just cramping.

Have you looked at your female blood line? I found out recently my mum had similar pains and because of my diagnosis she is now also pushing for it after being told her whole life nothing is wrong.

Sooner or later if you don't go away they have to do something else. Many of the scans etc don't show up endo as it can be very small, so the best way is to have Laparoscopy with a good surgeon and have them take a look. Until that is done no Doctor can tell you for sure and you shouldn't settle for their 'opinion' xx Best of luck my dear

[Sara-x in reply to Hey_Becks]

Due to having to move around a lot in the last couple of years because of university, I've also had to change GP's a lot. And every one I have been too has been just as bad as the one before!

I know that my sister has experienced similar symptoms but has said that it's no where near to the same degree so has never looked into any of it.

Think my only option now is to get a referal to an actual endo specialist if nothing else comes from follow up appointments from this lap.

Thankyou for the help! x

[Hey_Becks in reply to Sara-x]

Just keep pushing, knowledge is power too. If you are able to challenge them and say 'no I wan't it looked into' then they have to. Ultimately we are only getting their informed opinion anyway, you know your body better than them.

Best of luck I hope you get some answers. x