Any advice welcome

[SLT82]

Hi all, I was diagnosed with suspected endometriosis early in the year, although nothing has shown on a scan. I was mis-diagnosed with PCOS 7 years ago. About two years back my period cramping was getting worse, moving to mid-cycle cramping on top. The pain is intense, I can tell when a flare up will be worse, my period is usually late. During the flare up I'm nauseous, occasionally vomiting from the pain which is usually full on aching mixed with the feeling that a knife is stuck in me, any movement makes it worse along with back pain so awful I can't stand, I also get pins and needles in my legs with numbing - last week my arm was also numb and turned purple, which makes no sense. Bad flare ups mean I have to lie flat for hours, sometimes days. This year it has been easier to manage due to working at home, I've had to leave a meeting prior to this as I was unable to sit or stand. I wanted to share my symptoms, not to moan as I know so many of us are experiencing this, but as I'm more worried that this isn't endometriosis. I'm due laparoscopic surgery soon, have just had my pre-op checks. Has anyone here not had it show on scans but it has been discovered during surgery? I'm not trying to get my hopes up but don't know what it could be if not and what would happen next. I've had similar surgery before on my kidney and the pain I'm in means I honestly have no concerns about going under the knife, it is welcome, I just hope to get an answer.

[Rjb_88]

Endo doesn’t show on scans so the only way to diagnose officially is a lap, so yes defs possible for them to discover it when they do the op. Scans can show areas where there’s high levels of adhesion / scar tissue. I had nothing on scans but loads of endo which was removed a few times now x

[SLT82 in reply to Rjb_88]

Thank you, good to know, I think I always presume the worst or think that I'm being over dramatic!

[mrsk8cook in reply to Rjb_88]

Although I had an endometrioma inside an ovary this is a good sign of endo. This shows up on vaginal ultrasound.

[Moon_maiden]

Hi

I have similar symptoms in the way of sitting/standing/eating.

Had lap which confirmed it was there and deep, waiting further op. Nothing showed on ultrasound beforehand apart from fibroids. MRI after mentions adhesions, but until the op you can never really know.

If you’ve had pre op shouldn’t be long

[SLT82 in reply to Moon_maiden]

Think I completely forgot to say that I also notice I can trigger pain with certain exercise too, and going to the toilet can cause pain. I was originally due the op in summer but for obvious reasons it was delayed. I did agree that they could do the full surgery without waking me if need be. Just have to wait and see if any restrictions will end up delaying it again. Hopefully your next op won't be too long.

[Moon_maiden in reply to SLT82]

Snap 🤦‍♀️

I can do a bit of cleaning and it kicks off! I think I’m finding if I stand upright it’s all feeling tight and won’t stretch properly, and bending squishes the insides.

Hardly done anything today, went to DIY store, eaten a bit more and will have to take some Oramorph shortly.

It’s a crazy position to be in. MRI is Saturday and they’ve added pelvis and abdomen to small intestine.

[SLT82 in reply to Moon_maiden]

I get this crushing back pain that almost feels as if it is winding me. I used to be able to do so much more though but everything is getting harder. I've been trying to clear some space in one of my two rooms (moved back in with my parents when I had the kidney surgery seven years back and can't afford to leave). The den is basically the storage room, I used to be able to spend a day getting on but I managed 90 minutes yesterday with several breaks and I still feel it today. Even just cooking from scratch can be a pain. I don't expect to fully get back to normal but I do just want to know why everything is now so hard. I hope it all goes well on Saturday.

[Moon_maiden in reply to SLT82]

Thank you

I really hope you don’t have to wait long. I hope moving back in they understand how you feel and you’re getting some support. I get that’s it’s difficult for people to understand at times, it seems hard to describe. Can you not get somewhere and benefits to help with rent? Quite often there is help with the deposit as well.

The research at Edinburgh I’ve read that they think endo cells are similar to cancer cells, it’s one of the reasons for testing a cancer drug. If this is successful it should hopefully mean that people can acknowledge the pain level that they automatically do with cancer. Should help GP’s understand more at least.

I’m expecting to get normality back after, used to work full time and two or three therapy sessions, after work, during the week.

Possibly expecting too much 🤷‍♀️

[Anastasia17 in reply to Moon_maiden]

Hi. I second what you say about the Edinburgh study comparing it to cancer, although it is not cancer. In Europe, they also call it that endometriosis is like cancer but without the metastasis. Looking at it from this point of view, it makes sense that cancer drugs could work to treat endometriosis. x

[Moon_maiden in reply to Anastasia17]

Hopefully the results will be soon, I keep trying to check. I asked the consultant about it, but he wasn’t happy and doesn’t prescribe off licence. It didn’t have any horrendous side effects.

Hadn’t come across that for Europe, doesn’t surprise me as they are much further forward in handling this condition.

I’d put endo into the autoimmune bracket, it might not be, but there views in the medical world, some for, some against.

[Endom27]

I didnt find out i had endo until surgery, was just suspected up until then as everything came back clear on scans. I also get alot of pain that you are describing x

[SLT82 in reply to Endom27]

I'm feeling more hopeful now without fully expecting a fix. Seems weird that I'm wishing for something but just want an answer to the pain.

[Anastasia17 in reply to SLT82]

It makes perfect sense and I totally understand what you mean. I, too, am in a bit of a limbo.

The lap, although performed by an excellent excision specialist, has not solved everything. I am awaiting a colonoscopy.

Like you, I do not wish to be ill.

But, having a clear diagnosis means that:

1. I have a name for my pain and symptoms. It is a massive psychological relief. to be taken seriously.

2. To know the name of my enemy enables me/medical professionals to put in place a battle strategy.

3. The GPS will have to accept that it’s not in my head and It is officially recognised by Medical professionals.

4. Finally, and more importantly, I would be entitled to receive a proper treatment and medical support, the one I never received for many years.

5. Less pain.

6. Going back to work.

7. Feeling relaxed and happy within myself, better to my family.

Even if it is not curable, even if the pain will never go away completely, to have a name to it, to be able to manage it means it is a weight in less, a fear in less, to rationalise the situation, to manage the condition, to be able to park it in a corner and move on with life.

I think these are perfectly valid aspirations .

I hope these make sense. x

[mrsk8cook]

Good luck my lovely.. perserverence is the key here. Never give up and always listen to your body. Xx

[Lily1986]

Hello.

I’m sorry for the pain you are experiencing and sadly it does sound like endometriosis.

Don’t worry about the scans showing nothing,.

I have severe stage 4 endometriosis and have lost count of the number of ultrasounds I’ve had before and after diagnosis which showed I was “totally fine”.

An mri can sometimes show deep endo but sometimes doesn’t and needs to be looked at by an endometriosis specialist to spot it.

The only way for a definite diagnosis is a laparoscopy which I’m pleased to read you are having soon and wish you the best of luck.

Message me anytime if you have any questions etc xx

[UnicornKisses]

I have stage 4 endo that infiltrated my bowel & blocked my Fallopian tube. It also produced a very large endometrioma on my left ovary. While the cyst showed up on ultrasound & the hydrosalpinx showed up on MRI, I had no definite answers until my surgery. A few doctors were actually quite convinced I had ovarian cancer 🙄. Luckily, a biopsy after surgery confirmed endometriosis but my point is that without the cyst I probably never would’ve had the surgery or therefore a diagnosis. I hope all goes well with your surgery ❤️

[SLT82 in reply to UnicornKisses]

Thank you, I had abnormal cells on my cervix two years in a row, both times treated, think part of me feels as if I'm a burden having further issues. I have to admit to burying it, I'm already prescribed co-codamol so can brush it aside a little, but the pain now prevents me from doing so much, I'm practically housebound, more so this year for obvious reasons, all I was doing was going to work then coming home, barely seeing my friends. It was only when I ended up in a&e that I pushed it. I honestly can't wait for the surgery, it feels like an actual step somewhere, I just don't know in which direction.

[UnicornKisses in reply to SLT82]

I’m so sorry it has affected you this way, that’s an awful way to live your life. It sounds like surgery is definitely a good step to take, I hope it brings you relief xx