In so much agony in stomach. Don't know w... - Endometriosis UK

Endometriosis UK

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In so much agony in stomach. Don't know what to do with myself 🙁

Glitterfairysparkle profile image

the past couple of days the pain in my lower left abdomen is getting unbearable. Im struggling to sleep and have a hot water bottle which normally helps but nothing is helping!!! Fed up of all of the pain I have been in constantly for over a year!! luckily I have my laparoscopy on Monday to see if it is endometriosis.. I'm so scared if it is and equally as scared of they don't find anything!! It's so overwhelming going in for an op where you don't know outcome! Also having dye test on my Fallopian tubes to check they are not blocked.. So tired of it all. I really hope I have some answers on Monday.. 😢

17 Replies

Hey there,

I am so sorry about your pain. Monday can't come soon enough but you also want it to never be Monday either? That is how I felt before my first laparoscopy anyway and mine was pulled forward due to constant pain. You are nearly there! Well bloody done!

Can you change position to reduce the pain? I found a well placed cushion on the right seat helped a lot. I wish I could recommend anything for the pain, but you are probably trying everything you can already.

Something to make you smile, maybe: If they use dye for the tubes: I looked like a blue smurf afterwards as the dye must have leaked down my back. ;) It washes off fine with a bit persistence and a shower or two, but the towel was never the same...ah...my husband laughed so hard, damn him.

Be well and everything crossed for relief and proper news come Monday.

Thank you so much for your kind words 💜. You are so right about the Monday thing! With wanting it be Monday and then not wanting it to be Monday. I will try a pillow on my right side. That's so funny about the blue dye! If I wake up looking like a smurf I will now know why! 😂

Good luck on finding

Please update your surgery!

Hugsx

Thank you will let you know how it goes 🙂 X

I'm so sorry for your pain. Unfortunately pain can only go away with dieting, hormones and/or surgery so it takes time in any case. In the meantime, try Epson salt baths, heating pads, Ibuprofen (I think you can take up to 400 mg a few times a day) which has to be taken before the pain gets to a dramatic stage.

I sincerely hope whoever is performing the laparoscopy is a specialised endo surgeon, otherwise you might feel even worse after surgery.

As far as the hysterosalpingography goes, we'll see. I'm wishing you all the best, honestly!

Hi thank you for info and for support 💜

I should of tried the bath salts! Iboprufen and paracetamol doesn't touch the pain unfortunately 😩. I found my consultant on the BSGE list as heard so many people say there endo had been missed when a general gyno has operated.

He said if he finds mild to moderate endo he will excise it and if it's severe endo affecting bladder or bowel he will have to wake me up and do a seperate surgery at a later date. He did say there also might not be anything there so I will just have to wait and see what he says when I've woken up after op. 😬 Xx

It's disgusting that they will cut you open just to reclose you if it's too severe! If it's severe, that's a much bigger reason to excise right away!

Yes, general gyno CANNOT operate regarding endo. They will always miss it or won't be able to excise everything or well and will always make you feel worse after surgery.

I'm sorry but unless a truly experienced one (not just one who can recognize endo) operates on you, you will feel even worse after surgery (especially if they have to cut you open and close you up). The more you get cut and restiched back together, the worse it'll be for endo. Just FYI

Thanks for the heads up. I'm having keyhole so spose not as bad if have to put a few stitches in. I think it's because he would need a bowel specialist to help.., I'm not too sure! There's a lot of people that think highly of him so I trust whatever decision he makes. I'm just going to have to wait and see what happens. Xx

Hi,

Sorry to hear you are having such a dreadful time. I hope tomorrow being to put you on the path to resolution of your symptoms. I should say that anything I write here should be taken as a lay opinion and that medical advice should always be sought from your GP or relevant medical team.

I think you will find a lot of different opinions about surgery on here. Endometriosis is a very variable pathology - it can be incredibly difficult to diagnose and complicated and hard to treat. I think you gynaecologist sounds very sensible, and sounds like they are following the latest guidance regarding treatment.

You are not going to be 'cut-open' and then 're-closed' for no reason. Laparoscopy is a keyhole procedure, so there are no large cuts involved. Any tissue remove then gets sent to the histopathology/cellular pathology dept where it is examined under a microscope. One of the reasons for this is to look for the presence of endometriosis at the microscopic level, this can be key in management of the disease.

If you have mild to moderate endo, the operating gynaecologist can do the appropriate surgery. The problem with severe endometriosis is the structures it begins to involve - most commonly the bowel or parts of the genitourinary tract. At this point your gynaecologist would not attempt to resect as that is not their area of expertise. A procedure to treat disease affecting these structures will usually be performed by a specialist gynaecologist in conjunction with a colorectal (bowel) surgeon or a urologist.

Endometriosis can really suck, the combination of uncertainty, pain and waiting is a horrible experience. But everyone will have different experiences. I think online pages often draw those who are suffering the most and having a really hard time, so don't be too put off by the negative experiences of others.

In the mean time there is no reason not to address your pain, this is probably not an absolutely immediate concern as you are about to to be admitted. But if you are still in pain afterwards despite over the counter painkillers, go back to your GP. As GP slots can feel pretty short it helpful to book a specific appt to discuss pain/pain relief, rather than other endo problems. Also, when you see your gynaecologist in clinic, ask them about pain relief. If your GP is unsure about what would be most suitable ask them to contact your hospital team, or the relevant specialist nurse if you have one.

Good luck for tomorrow.

BW

Thank you so much for taking the time to write to me 💜. I do trust my consultant so I do feel it would be the right thing to do if he discovered endo on my bowel or bladder to stop and get some specialists in to help like you said. Thank you so much for going indepth about what will happen and also for the advise on pain management. 🙂 Fingers crossed I have some answers tommorow xx

I hope your surgery goes well tomorrow 💓 I understand what you mean by the relentless pain, it’s horrible and I’m so sorry you’re feeling it. I find codeine tablets and paracetamol together knock me out although do take the pain away pretty much - it just depends wether you’ve got them prescribed and wether you want to be a zombie... otherwise bath salts as someone previously said! In a nice warm bath, full up enough to support your back.

At least tomorrow you will be in the hands of the hospital and they’ll give you the appropriate pain relief post-surgery...

I’m currently waiting for a laparoscopy date and can’t wait for it to come soon enough, but similarly am so worried they won’t find anything!! I don’t want endo but I do want a diagnosis.

Wishing you all the best for tomorrow and a speedy recovery xxxx

Hi thanks for wishing me luck 🙂 I'm unfortunately allergic to codiene 😩 but hopefully I will have some answers tommorow and eventually have no pain!! It's an awful feeling not knowing if they are going to find endo or not! It would just be amazing to have an answer to why I have been in pain so long and why my periods have been odd.

I hope you don't have to wait too long for your laparoscopy. I hope you eventually have some answers too! As it is so physically and mentally draining 💜.

That’s okay! Oh no, the other good one I take is naproxen, although I do think there’s better pain relief than tablets sometimes you’re left with no choice... I hope you get the answers you’re hoping for, it is exhausting but I’m wishing you all the best xx

Thanks 🙂 . You too xx

😊don’t forget to update us

Will do 🙂 💜

Update!!! My consultant found deep infiltrating endometriosis on left side of Pelvis and under cervix which he cut out. Then found a tiny bit of endo on right ovary and left appendix which he burned off!! So he said it was rather bad.i finally have an answer!!!

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