Unexplained infertility and pain!

[Annie0123]

Hi all,

This is my first post on here and I'm wondering if any of you can offer advice. We've been trying for 2 years now with no luck and are due to start IVF in January. We're currently in the 'unexplained' category - all my blood tests and ultrasound scans have come back as normal apparently and hsg showed tubes are fine. My other half's tests came back fine too. I'm 33 and he's 35.

Ever since I came off the pill over 2 years ago I've been in terrible pain, mostly on the right hand side of my abdomen in the week before and during the first couple of days of my period (been on the pill since I was in my teens as periods were just too painful). I also have brown spotting for a few days before my period every month. I've asked at the clinic about endometriosis but they said they don't think it's anything to do with my infertility as my tubes are open and they can't see anything on my ovaries on the ultrasound. Trouble is, I'm not sure how much more of this pain I can take - thought I was going to pass out in a meeting today as it was so bad.

Has anyone paid for a laparoscopy privately? Just don't really feel like the nhs is taking me seriously (been to gp numerous times but never been referred). Also feeling like the IVF just isn't going to work because of it (need to change my mindset I know!).

Anyway, any thoughts would be greatly appreciated!

Ps. Sorry for the long post!

Hi Annie, I've no personal experience of this but I'm bumping for you as hopefully someone will come along who has. From what you describe it does sound like it might be endometriosis and certainly no one should have to put up with that kind of pain. If I was in your shoes I would be back to my gp to try and insist on referral to a specialist for laparoscopy.

Hi there, hope you feel better soon! Good luck with IVF! That's a route we will be likely to be heading down inna few years too.

I have been diagnosed with endo. It doesn't usually show up on the scans and is why they perform a lap.

I was told i was making up the pain or exaggerating for years.

I knew something wasn't right and was worried it could have been endo or C. I persisted with countless visits to the gp.

So I asked for a referral to the specialist gyno from my gp and then paid for the consultation privately £150 so that I was seen quickly as opposed to being put on a waiting list for 18 months!

Within 2 months of seeing the specialist I was sent for the lap. This on was the nhs as it would have cost ££££.

It helps me psychologically by obtaining a diagnosis as I knew what was causing me to feel so crap. I still get the pain, but I now know why and it makes it so much more manageable!

Hope this helps in some way? Feel free to message me privately if you want :) x

Annie I know for sure endo cannot be diagnosed by any other means than a lap and that it can affect fertility and I think make your IVF cycle less likely to work even if your tubes are clear. There are several posters on here with experience of this, who I hope will come by. But I would push and push to get this seen to, before your cycle. I reckon a private lap is v expensive, but a consultation may well be worth it, like the catlady did.

Are you in or near London, Annie?
The leading endo doctor, who also happens to take an interest in general fertility issues, is based out of the Chelsea & Westminster and Lister Hospitals, and sees private patients
His name is Robert Richards and he is lovely.
A private consultation is £200 and a private laparoscopy is around £1000
He is the best in the UK if not Europe

If you live in London, you could ask your GP to refer you to him for investigations, although I don't know what the waiting list would be like

"I've asked at the clinic about endometriosis but they said they don't think it's anything to do with my infertility as my tubes are open and they can't see anything on my ovaries on the ultrasound"

I would argue that you are not unexplained at all. All that means is that they have failed to find out what is wrong. Sometimes its a "diagnosis" given to people when they have not been adequately investigated. I do not feel that they have investigated you enough. If your periods were also painful in your teens that is a possible indicator of endometriosis as well.

I would seek a second opinion. If GP is unhelpful change GP practice, no point in dealing with unhelpful GPs.

Endometriosis cannot be ruled out here and it does not just occur on the fallopian tubes or ovaries. It can and does affect the entire uterine cavity. Any pain that is cyclical in nature and or gets worse up to and including menses should be investigated further to see if endometriosis is indeed present. IIRC brown spotting can be characteristic of endo being present, this clinic too have not done a laparoscopy. I would seriously consider a lap op first (you do not want just a diagnostic lap either, you need a gynae surgeon with a specialist interest in endo) before you at all embark on the IVF process.

Guys thanks so much for you replys, they're so helpful. I have an appointment with my GP week after next to discuss it yet again so I'll speak to them about going privately.

Sparechange yes I'm in London so will definitely look into it - thanks so much for the recommendation.

I can only get one cycle of IVF on the NHS in my area so want to give it the best chance I can, so may be its best to try and push it back until I can get a lap.

I've been told that the best successwith IVF (when you have endo) is soon after a lap. I'm not sure how accurate that is, but it does make sense if they clear it all out (which is what they usually do when they're in there investigating... make sure you agree this before hand)!
Good luck with your appointment x

Torth

There is some very limited evidence to suggest that IVF success rates are slightly improved after an endometrial scratch, either as the by-product of a Hysteroscopy, or a scratch deliberately done by a clinic
The idea is that as the body 'repairs' the scratched area, it creates a more blood-rich lining which makes implantation easier.

I'm not sure how this would apply after a lap, as this isn't done inside the womb, so wouldn't effect the endometrium in the same way

That's a fair point :)
I'm only sharing what i've been told in the past in the hope it may be useful to someone else.

Annie, definitely push for a laparoscopy. Insist on it, if needs be. Excruciating abdominal pain is not normal, and needs to be fully investigated! Too often doctors dismiss abdominal pain as IBS and end up missing important things. Ask for a CT scan if needs be. If your doctor refuses, go private if you can.

Can you describe the pain?

Annie it could be Asherman's Syndrome-

My case -
Pain always in same place around my period
Periods light or normal
No sign of endometriosis
Everything else v good
Recurrent MC
Trying for 4 years
Scans, laparoscopies and all tests normal

Finally had hysteroscopy on Monday with camera in womb and they found scarring on RH side where pain is.

The Gynae's said they don't know what it is and haven't seen it before - it's rare - but I've googled and found support groups of women who say it's Asherman's Syndrome.

Going private to see Mr Adrian Lower on Monday one of only 3 specialists in U.K. Who may be able to help

Can be treated for most

Google him

Xx

Had similar symptoms (not on the pill) & was diagnosed with 'minor' pcos. Am on metformin and clomid now. Might be an idea to demand blood work