Please help, suspected diaphragmatic endo... - Endometriosis UK

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Please help, suspected diaphragmatic endometriosis

Gem89k
Gem89k

Hi everyone, i'm looking for advice or anyone with similar symptoms as i cant cope with this pain any longer :(

I have been having pains in my left and right sides since December, had many trips to the Drs before lockdown who are baffled as to what the pain could be.

I've also had horrific period pains since December as well, it feels like im in labour and i've only just realised the 2 might be linked and might be symptoms of diaphragmatic endometriosis, i also have tight chest pain which comes and goes.

The dr put me on the combined pill in March and for 2 months i had no periods or pain (side pains are ongoing) To complicate matters ive had to come off the pill in the last few weeks as i developed a large blood clot on my lung which the consultant said was caused by the pill.

About an hour ago my back froze and spasmed and i couldn't move, im currently sat with a tens machine on my back which is helping slightly but i cant move.

After being diagnosed with the blood clot im terrified to go on any other type of contraception and 3 days after being diagnosed with the blood clot i came on my period and the pains lasted for 3 days, as im on blood thinners i cant take any ibruprofen based products and ive tried naproxen and menefamic acid and they dont touch the sides, im hoping the tens machine will help when im due on over the weekend but i cant carry on like this.

I have a 9 year old son and its just us 2 normally and i feel so bad that he sees me in pain and we are having to stay with a relative as i cant do anything for him while in pain.

Sorry for the long post, does anyone else have symptoms like mine?

Thank you in advance and i hope everyone is ok xx

7 Replies
oldestnewest

Hello there. I'm sorry you're in so much pain. :(

I've had endometroisis for 5 years now (because of the 4 C-sections I have had) and all that surgery has unfortunately caused the pain i am in now. I have decided against surgery and I refuse to go on pills HRT coils etc. I like you have seen mates get blood clots and so I am avoiding them. ><

I started off with just pain around my belly button which has progressed to reaching to my left side of scar and now i have a large 'lump' there that hurts like anything! I also have a hard lump on my right side which hurts too. So sleeping on either side is absolute chaos. I end up just being propped up on cushions and sleeping on back. ><

However lately i have had this pain on my sides too that you mentioned and it seems to be linked to my endometriosis because it gets far worse when i am on period and as one person mentioned on here, i think it has now spread to my abdominal wall and/or back. I also feel it under my skin and now i think its spread there too. ><

I am on the anti-inflammatory diet and I am starting to see an improvement of symptoms not that much, however its early days yet. I think you have to at least give it a year to see any real improvement.

The pain you are feeling COULD be it growing on your abdominal wall/back, but I can't be sure. I have no idea how they'll diagnose that, but I believe MRI is the best way forward that can pick that up and help you avoid unnecessary invasive surgery. I too am waiting for this lock-down to go away so i can ask for a MRI to confirm my suspicions and to help see how/if it has spread.

Sorry I couldn't offer any relief or solutions but I hope this helps you on your way to getting some answers.

Wishing you all the best. I feel for you, i really do.

M xx

Gem89k
Gem89k in reply to Mulan64

Hi, thank you so much for replying, im sorry to hear that your living this nightmare aswell.

I'm the same at night i normally love to sleep on my front but for now im trying to sleep on my back with a hot water bottle to hand as its too uncomfortable on my sides.

I'm going to call my gp tomorrow morning and enquire about mri, they just dont seem very helpful the drs.

I would want the lap op but one of the risks is blood clots :( im more prone to getting them now, hopefully after i come off blood thinners i can look into it.

I shall look into an anti inflammatory diet, thank you so much.

Wishing you well xx

Mulan64
Mulan64 in reply to Gem89k

You're welcome.

No, they're not very helpful. They don't understand this condition. They only know textbook conditions. Need to get hold of an endometriosis specialist and from what i have heard they are rare to come by which is just great ><.

I think mine might be called cutaneous endometriosis because the symptoms sound about right. You might want to look that up and see if the description fits.

This book has helped me loads. I hope it helps you too.

Recipes & Diet Advice for Endometriosis by Carolyn Levett

All the best.

M x

Gem89k
Gem89k in reply to Mulan64

They really dont do they, yes im just looking online for a specialist they seem to be like gold dust!

Thank you i shall look it up, i didn't even know there was diet books for endo, i really appreciate your help .

Its comforting that as horrible as it is there are others going through the same situation, hopefully one day we will be pain free xx

Mulan64
Mulan64 in reply to Gem89k

Gold dust! 😁😁. So true...even that would be easier to find!

Yes there many books out there and I've read a few ( or a lot!) and I found this one to be the most informative. Recipes are well thought out and presented and seem very easy and delicious. ( never thought i'd say that about veggies haha). But yes give it a go.

Yes I feel the same, its horrible to know so many others are going through this but comforting to know we are not alone. If there's one thing this condition has done to me its it has isolated me from my family husband and friends. This has been the hardest for me. Although very supportive they don't understand what i am going through and I always feel like I am annoying them my non stop talking about the pain that I see to have gone the other way and have just withdrawn. I hate having my kids see me like this, want to be strong for them but this thing won't let me. :(

I am sick of taking about it so they must be sick if hearing about it! I seem to have made connection to this pain instead and only because I want to get on top of it and hopefully like you said, be free if it one day!

Wishing you a happy and pain free life soon!

Chat anytime

M x

Hiya

Oh dear, sounds like your really going through the mill!

I had lap surgery a year ago now for my endo. After I went on the Neroday pill, which settled me alot. But this went out of stock which has been a nightmare. In the last month I have had really bad pains in my chest, which Iv never had been before. Taken about 2 months to start settling and stop bleeding again.

Hope your feeling better soon. It’s a horrible disease that can be really painful & emotionally draining.

X

Gem89k
Gem89k in reply to AmyOz29

Hiya

It really is draining isn't it, I think because there are so many symptoms you can have aswell it gets overwhelming.

That's so frustrating something that was helping you and now you cant get it :(sorry to hear that your having problems, how did you find the lap? X

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