Lap - no diagnosis. Frustrated

[Roop31]

Hi Ladies,

Just wanted to ask for some general advice. I had all the symptoms of endo- heavy periods, crippling cramps and sometimes couldn't even function some days due to the pain. Had to take months off work as I couldn't move. Doctors kept dismissing it as IBS (I changed my diet everything to try and relieve the pain) and gave me the pill which raised my blood pressure so high I had to stop taking it.

Finally I got booked in for a lap and hysteroscopy. The results showed no endo or anything abnormal but they fitted the mirena coil at the same time. Not that I want endo but feel so frustrated I haven't got any answers as to the cause of constant daily pain.

Its been more than two weeks since the op and I still don't feel right. Is there something wrong with me? Everyone else says it only takes a week for recovery, I didn't have anything done but I almost collapsed at work today.

I got my period recently and its just making things so much worse. I am still in constant pain walking or moving around and the cramps and amount of blood I am getting are just horrendous and been put on tranexamic acid. It started off light but is now so heavy I soak through pads and my shorts.

I have now had to take further time off work and get signed off. This is making me very stressed, anxious and frankly depressed continuing like this.

I was just wondering if anyone has had any similar experiences in relation to recovery times? And not getting to the root of the problem. I feel like other people think I'm making it up because they haven't found anything and I haven't recovered in the suggested time frame its affecting my social life and mood all the time.

[weekari]

Oh you poor thing. I really feel for you. I have quite different symptoms to you but had a clear lap 2 years ago and felt so lost. I was discharged from gynae with no medical help. Life has been tough.

I had to find my own ways to cope. I started to meditate, do yoga and sought out alternative treatments (chiropractor, physio, acupuncture etc). It has all helped me cope. I was eventually referred to orthopaedics and had an mri, they thought I had arthritis. Instead severe endo was found throughout my pelvis. I'm still getting tests as I also have a cysts and they're planning surgery.

My advice to you is to give yourself time to heal.. We're all different and take different times to heal. It was about 4 weeks before I went back to work and I still struggled. You need to listen to your body.

Once you feel a bit stronger, just get back to the dr and dont give up. I would highly recommend using alternative treatments too. Just listen to your body and trust your instincts.

You'll be ok. Xx

[Roop31 in reply to weekari]

Thank you. I'll have to look into alternative methods now as I don't feel like I get any answers and my GP is always so dismissive. Others have told me its a mental issue and I just need to learn to deal with the pain which at times is impossible!

Looking into meditation to calm myself

[C765]

Can't imagine how frustrated you feel right now, I have seen some cases on here where the guarnatolgiest wasnt BSGE qualified and missed it, maybe have a search on here and see if you can find those posts (if you haven't already).

I have recently heard of Adenomyosis, which has pretty much the same symptoms as endo but the endo is inside the wombs muscles which they can't see during a lap as the lap only checks the surface. Have a google and see what you think. But i

Really hope your ok and this gives you a bit of hope to keep investigating it, sending lots of love xxx

[MaloushkaPat]

Hello!

I have been in a very similar situation. Got a lap last December which came back all clear and normal. I was convinced after that that it was all in my head and I was going crazy (my consultant didn't help either as she was really dismissive and told me before I got the lap done that she already thought they would not find anything but had to do the lap more like a tick box exercise before she could send me back to my GP...). Like you, they did no work, they didn't take biopsies (which I learned later they should have done), only looked at a very limited zone of my pelvic area (also figured out later on they should have had a much more thorough check), only had one incision and they sent me home saying to go back to my GP and not to bother gynae A&E and go to a general hospital if I had any problems following the lap. They told me it would take about 3 days to recover! In reality it took me 2 weeks to start feeling normal and only went back to work after these 2 weeks.

The next ovulation time I had following the lap was awful, extreme pain in my lower right tummy, back and leg. Decided to go the GP and becausz of the clear lap they suggested grumbling appendix and gave me tramadol for the pain. Then my periods came and it was a complete nightmare, no painkillers touched it included tramadol, I decided to book an emergency GP appointment (where I got seen by an amazing GP) but as the gynea at the women's hospital said to not bother them, my GP sent me to the general A&E as she thought I was having an acute appendicitis. I came to the hospital and the doctor on duty (in the middle of the winter crisis...) told me off, that it was a gynea issue that I was having and that I shouldn't be here! I was going around in circles and decided enough was enough!

I decided to pay for a private consultation with an endo specialist who was recommended to me and who I researched before I booked the consultation with as I wanted to make sure he was skilled in diagnosing endo and adeno. It was the best 200 quids I ever spent! He suspects digestive endo including on my appendix and/or adenomyosis. I have several options going forward in terms of treatment and diagnosis and he referred me back to his NHS clinic as I am having a lap with him on 10th September where he confirmed he will look in whole my pelvis and other places where endo can grow like the diaphragm for instance. I'm preparing myself for the eventuality that he won't find anything either but at least he gave me other options of where to go from there if that is the case!

Please don't give up, try and see if you can get a second opinion! Good luck xx

[Roop31 in reply to MaloushkaPat]

Yes! They didn't even explain to me what I'd have done and said all clear as I was coming round from anasthetic with no further info! I was already disorientated.

Its my bowels and stomach I suspect I have a problem with but I don't even know if they checked that? Will have a look into private consultants now as I cannot go on like this xx

[MaloushkaPat in reply to Roop31]

Good luck! I didn't even know what they did afterwards either, found out by my GP and they did the bare minimum! Xx

[El_mai]

I completely understand how you feel! I had a clear lap in May, and although relieved that no endo was found, I was frustrated that I still had no answers to my pain. Before my lap my consultant made me feel as though I was being a drama queen and there wasn’t anything wrong with me so I felt even worse afterwards knowing they hadn’t found anything.

Although my recovery was quite good, my symptoms have not improved- in fact I would say may have gotten worse. I am bleeding EXTREMELY heavily whilst on my period and the pain is so bad that I can hardly stand up for the first few days. It’s ridiculous.

I know that my symptoms can’t be normal but i’m so frustrated to not have any answers.

I have my follow up appointment with my gynae next week but I feel as though it’s going to be an “I told you so” as they didn’t find anything abnormal in my lap. I don’t know what the next thing to look into is but I won’t be happy if they just try and discharge me!

[Roop31]

Did you have the coil inserted at the same time? Don't let them fob you off with mediocre answers. If they say nothing further can be done ask for copies of your results and images to take them elsewhere.

I hope you get your answers! Good luck xxx