Should I still be concerned about endo or should I look at getting help for my health anxiety?

[BRYAS]

I’ve been getting on and off pelvic pain for just over two years now. The pain can be cramps or a dull ache, usually mid cycle however there is no real pattern to it. It can be in one side or all over the lower pelvic region. It can be quite painful, to the point where is disturbs my sleep and OTC pain relief does not work.

In terms of tiggers I am yet to discover what it is; I do however think stress plays a part in it for me.

I’ve always been afraid of the likelihood of this being endo; so much so that I’ve been to the doctors numerous times and had countless tests and scans etc. (All came back clear; the only test I haven’t had is a lap)

Each doctor (and I’ve spoken to about 5/6 different doctors including a few different gynaecologists) has told me it’s very unlikely it’s endo as my symptoms do not typically match the endo symptoms. My periods are fine, infact I never get the pain while on my period. They’re about medium flow and last a couple of days, a week at most.

I get no other ‘endo symptoms’.

Ladies who have endo; should I be concerned my symptoms are being overlooked or should I trust the doctors and get some help with my health anxiety?

[Moonglo]

The anxiety could be from feeling out of control.

I suggest keeping a diary tracking your symptoms, what you eat and how you feel (emotionally and physically). This should help detect patterns and triggers.

It could be that endo was missed as having a lap is the only way to diagnose endo (mri too for certain situations - there are more knowledgeable posts about this on the site).

It could be you have another health issue too.

[Lilac01]

This one is really hard to call and I'm sorry you're experiencing this.

I think everyone on here can relate to that just not knowing whats going on with your body. I've only just had my lap and found out I had endo and polyps in my womb.

I had scans etc that all came back clear and to be honest doctors kept telling me I was just tired or needed to drink water, so if I'm being honest, I wouldn't take the GP's word for it. It took me to research all my symptoms when they simply got too much for me to bear anymore and me telling my doctor I wanted to be referred to gynae because I thought I had endo.

My advice to you is keep a diary of what your symptoms are that you do have, and at the same time ask to be referred to gynae who have more of a chance of helping you find out what this is.

Not everyone with endo actually experience all the same symptoms, infact symptoms can vary hugely from person to person.

Good luck with your journey and I hope you find some closure sometime soon Xxx

[Noodle1984]

There are other things that can cause pelvic pain other than Endo. There is even a pelvic floor disfunction that causes tightness and pain. I will say don’t overlook the pelvic pain but if you’ve seen that many specialists I would say it’s likely not Endo. But it doesn’t mean what you’re feeling isn’t real. Don’t let it go a long time. I say this because you can end up with central sensitization and then fibro. I have fibro it’s no fun. I would highly recommend making a few appointments with a specialized physio in pelvic floor. I have a pelvic floor disfunction, Endo, and adenomyosis (I have a total of 15 chronic conditions...). I live in Canada and was lucky enough to be seen by the top doctors at a specialized Endo and pelvic pain clinic. One thing I want to say that I learned is not to cross your legs. When you sit leave your legs open, when I sit on the couch at home most of the time I leave them in like the butterfly position. You can feel the tension release instantly from your pelvic floor. All this pulling and tension from crossing your legs can lead to central sensitization.

You can also try and see if removing dairy and gluten help with your flair ups.

What people don’t realize is that with any condition there is a lot of other things that can play into it like stress. I would try adding in some meditation to your day. A big component of the pelvic pain clinic is a 6 hour workshop on how to deal with pain and such but we also discussed anxiety. Getting help for your anxiety doesn’t make you weak or bad! You just have extra chemicals floating around.

Please feel free to send me a message with any questions. I hate to see other people constantly being sent way by doctors. (In the past 5 years I’ve seen no less than 12 specialists, multiple rmts/physio, occupational therapists, the list can keep going on. I say this because I have been laughed at and turned away many times. Just keep fighting. You know your own body, please please please listen to it.

[Moon_maiden]

I’d go with keeping a diary.

It’s going to depend on what scans you’ve had, endo can show on MRI if it’s deep, not superficial. If the gynaecologists you’ve spoken to don’t specialise in endo it could be dismissed. Ultrasound has to be in very experienced hands for the practitioner to consider it.

Can rule out other things though.

Have you had blood tests for hormonal levels

[BRYAS in reply to Moon_maiden]

Yeah I’ve had multiple blood tests and they all came back within the normal ranges. I think it may have something to do with my contraceptive implant

[Moon_maiden in reply to BRYAS]

Mine did as well, but it was definitely hormones,, I took pill in November and that helped. The only noticeable difference for me with Zoladex is that side of things. Last year I knew there was no balance in the hormones, but I was still thinking perfectly logically. I just couldn’t seem to get that across to GP’s. Such a different experience when I paid to see a consultant. If I’d seen him NHS I think I’d have had the same experience. But you rarely see the main consultant.

I’ve found with other things that consultants/registrars take notice of referral letters too much sometimes, one in particular for ENT had already made a judgement before I’d seen her.

Maybe talk to GP properly about both possibilities without being rushed. Have notes with you. Maybe take someone with you as support. (You can still do this given what they’ve said in the past)

Hope you manage to sort things out.

[BRYAS in reply to Moon_maiden]

Thank you for this advise, I think I will definitely have another long conversation with my GP about this and make them aware I’m concerned. I do have a feeling my contraceptive implant is playing a role in this issue as I had no problems what so ever prior to having it inserted

[Moon_maiden in reply to BRYAS]

Let us know how you get on. 🙂