How to proceed? "no fibroids or growths" during abdominal ultrasound - severe pains during ovulation and sex

[GreenOtter900]

Hi all -

First time here.

I have had severe ovulation pain and pain during sex for several years. I started having severe cramping and shooting pains up and down my vaginal canal during sex, which lasted as soon as we stopped too. Ovulation pain also. Both random, every few months maybe, during my early twenties.

I had an ultrasound at that time, but was never followed up and being young, I just left it.

I've since stopped using all hormonal contraception and feel much more in tune with my body. I know when I ovulate because I can feel it, but in a normal month it's a little achey but nothing substantial. The past few years the sporadic pains during sex and ovulation continue. The worst time, I almost blacked out, I couldn't stand up for the pain and get myself paracetamol/ibuprofen (which make no difference anyway). It lasted about 2 hours. My "normal" amount of pain is also not affected by standard painkillers, I have to just focus on functioning/breathing etc while I wait for it to go. I've been in meetings or out and about and it's really difficult to function.

I've since moved and registered at a new GP, and been more consistent and pushy with the Dr about solving it.

Dr originally told me it sounds like normal ovulation pain (!) but referred me to the gynae. Gynae conducted an internal exam and asked me lots of questions. I had an abdominal ultrasound last week. Ultrasound tech spent 5 minutes (literally, not a minute over) looking and told me she can't see any fibroids, growths etc.

I've already had blood tests and it's confirmed not PCOS.

I've been booked in for another gynae appointment by telephone. I'm worried they will try to palm me off again - they already said they can just prescribe some stronger painkillers for those moments, but it's "normal". It's getting emotionally tiring to be told this at every point, from the GP to the gynae to the ultrasounds tech.

But - I'm reading the accounts on here - I'm convinced there's something else going on still. It just doesn't feel "normal" - I'm sure there's more than the ultrasound showed. The pain is just unbelievable, even when it's quick.

I don't know what to ask for in the next gynae appointment to push them to keep looking. My mum said they must have eliminated endometriosis as an option, but it seems that many of you have also had ultrasounds that totally missed growths that were then found during laparoscopy.

Any advice on how to push the gynae to keep looking? Should I ask for laparoscopy or referral to a specialist? Something else (I was considering if I should go private - interested to know if anyone had more success with that route and if you're open to sharing, how much it cost)? I'm still not sure it's endometriosis, but I can't find verified advice online about what else it could be and the pain symptoms fit best with endo in my opinion. Any advice on best way to proceed would be great. Thanks.

[GreenOtter900]

Also to add - my periods are about 10 days difference in regularity - 28 to 38 days. I don't think they're affected by stress... Not sure if relevant but forgot to add.

[KittyTherapy]

Hi,

It may help to read the NICE guidelines for endometriosis as it covers the investigative recommendations and you could quote this when you speak with gynae. My ultrasound also came back clear then endo signs were seen on MRI. I did have to insist on further investigation as they tried to discharge me! I've since had laparoscopic surgery to treat the endo. Its exhausting but definitely keep advocating for yourself. It might help to keep a symptom / pain diary to also provide as more 'evidence'. Good luck with everything x

[CrochetDogMom in reply to KittyTherapy]

I was about to say this also! Deffo read the NICE guidelines before your appointment and quote it if needed. The only real way to get a diagnosis is through Laproscopy therefore there is no way they could have eliminated this as a potential diagnosis. It definitely sounds like they haven't done the full investigations.

I hope you manage to get further on your next appointment.

[GreenOtter900 in reply to CrochetDogMom]

Thank you both for sharing. I will definitely download the NICE guidelines for some bedtime reading before the next appointment

[Hannah818]

Try and push for a pelvic MRI , took me a while to to persuade GP and gynae but kept asking and finally got a diagnosis after years of being told it was something else

[GreenOtter900 in reply to Hannah818]

Thanks for sharing, very helpful!

[BloomingMarvellous]

First and foremost keep going and trust yourself. Always trust your instinct. Others are not in your body and you know this isn't normal and okay for you.

As to the rest, ultrasounds although some progress has been made with both training and images are not a reliable indicator of the presence of endometriosis. It's useful to rule out other issues and to show some Endo but it's not a hill as a medic I'd be willing to die on to swear that endo isn't present. Unfortunately the message of its shortcomings aren't really properly addressed amongst many.

Your Mum although caring, isn't qualified and seems naive in the ways of Endo and the struggles of achieving a diagnosis. Don't let the lack of current diagnosis or minimisation of your issues stop you trusting yourself. Push forward . There is a reason ! In the meantime bone up on Endo - try Heal Endo by Katie Edmonds and look at @corerecoverypt for good pelvic physio.

It took me over 40 years to get a diagnosis. I am very able to advocate for myself, medical professional, I pushed and was dismissed ; shoved into other areas as sources for my problems.I lost much of my active life to this problem. You don't have to walk the same path as many of us. Use your instincts and keep advocating for yourself. We are here cheering 📣

[GreenOtter900 in reply to BloomingMarvellous]

Thank you for sharing your experience and the recommendations. I will definitely look into those resources!