At My Wits End!!!

[Leeshaun]

Hi Everyone

Not sure if anyone can give me any advice or support not sure what to do?

2 years ago I had my second ovarian cyst removed where they also took away the tube and ovary, whilst having the surgery they found that I had endometriosis and since then I have suffered with bouts of pain and discomfort. In the last 6 months everything has changed..... It started with my periods being all over the place and very heavy and the GP was convinced that I was on the change. I went to get blood results but had to see a different doctor who read through my notes and started asking questions. I was referred back to the Gynegolosist who confirmed what the GP had said that the endometriosis had gotten worse and that it had attached itself to my bowel.

I am now waiting for an operation to correct this, however I am in incredible pain having to take medication to help me go to the toilet and to stop the spasms. Its getting me down my family are being very supportive but I try not to show how much pain I am in around my Daughter as she gets scared. I have recently had to writing the the hospital along with a letter from my GP to see if the consultant will see me again so he can review my case.

Is there anything that I can do or take to help with the pain??

Really fed up and just want it to go away. Wish I could be normal at the moment making my family's life hell.

[daffodil]

Sorry to hear you are in such pain -we can all empathise with this.Are you having constant pain?Lots of treatments can be tried to supress the pain temporarily -the pill ,progesterone,Gnrh agonists ,but all take time to kick in .Don't know what pain relief you take,but definitely ask GP for stronger.Doctors always start at lowest/weakest pills and work up,then try combining.Everyone is different with what they can tolerate,but you must keep going back Gp if in agony or even A and E.For me I am on dihydrocodeine,max dose,paracetamol,gabapentin( for nerve pain-stabbing,shooting) which allows me to get out of bed but am still inpain so rely on my trusty water bottles front and back.I did answer another post on pain relief -typr pain relief in wee search box.

This is such a great forum. have not bee on it long,but it has been a great help to me and Im so greateful to the lovely ladies who have taken time to answer.Weare not alone and as we are all at different stages ,there is always someone who has been through it.worn the tshirt!

Feel freeto post anytime or pm if you want to chat in more depth.Big hugs.

[Leeshaun in reply to daffodil]

Thanks Daffodil for your kind words and support. I got ibuprofen and co-dydromol, as well as laxido. I keep returning to the doctors each week and i'm sure they must be getting fed up of me.

I will take you up on your offer to talk again, it's so great to be able to talk to people who understand what i am going through hand the kind of pain i'm in.

Thank you very much for being there xxx

[daffodil in reply to Leeshaun]

Will pm you -s ounds like you are in a very similar situation as me just now!

[Impatient]

Its a tricky dilema - the pain killers constipate you - but the constipation puts tremendous pressure on endo wounds. Have you noticed bleeding from the rear passage with each period? If not then it is hopeful the endo is on the outside of the bowel and not yet invded inside. It can cause a huge lump to push in the wall of the bowel mking passing poo really hard to do anyway - without the added complication of constiption. The best relief aside from pain killers is to make a really decent effort to keep your bowel movements as loose as possible to enable them to get pst the partial blockage(s) easily and without causing you more pains. That in itself is not an ideal solution - because it can lead to dehydration - so keeping topped up with fluids is essential at the same time.

Incase you are wondering what these blockages can look like - there's a decent illustration on the following webpage:

gynsurgery.org/ols/uploads/...

It hasn't invaded - but is doing a darn good job of obstructing the tube from the outside.

This may not even need major surgery on the bowel itself - depending on the progress of the endo - it may just need cleaning out of the POD (pouch of douglas) which is the gap between the uterus/vagina and the bowel. If it does require surgery on the bowel itself - then that is a more major op.

The NHS recently published guideline for this recto-vaginal endo is on

england.nhs.uk/wp-content/u...

Speak to your GP about getting suitably strong pain relief to tide you over - but the laxative (liquid tablets and supositories - you buy those yourself from the chemists.) It's not forever - as this is fixable with the right surgcal team. but in the meantime it needs daily management to avoid making pain worse.

[Leeshaun in reply to Impatient]

I haven't had the bleeding like you said thank goodness, its a scary thought of what could happen in the time you wait for your op...... the consultant has said that my bowel will have to be operated on and i will have a bag to wear. Really scared but I know that this needs to be done. Thank you for all your information and support xx

[daffodil in reply to Impatient]

Thanks for this info Impatient- this is great information.I really appreciate and enjoy all your posts.

[Mrs-T2014]

Hi I had surgery 5 weeks ago which my endo had decided to join my bowel and womb together plus other stuff, I wont bore you with the details! I remember when I suspected about 15 months ago that it had grown on my bowel I used fybogel then the Dr prescribed mebeverine tablets on top as buscopan had stopped working! Painkiller I have mefenamic acid these are quite good specifically for gyne disorders from the Dr. It got to a point where nothing worked and I knew I needed to go in as I had been battling from this condition from the age of 11 now 28! I find after surgery colpermin works best for me and dare I say it peppermint tea I don't like it but I force myself to drink it as it works for me. I have now had the mirena coil fitted in surgery as I was being treated with 1 microgynon and 4 norgeston tablets a day which was prescribed my consultant about 3 years ago again it worked for a while but the pain became to much. Good luck get them hot water bottles on the go to as they worked great at night when resting x

[Leeshaun in reply to Mrs-T2014]

Thanks Mrs T2014, for your words of support. I have been currently prescribed mebeverine tablets, painkillers and laxido. The medication that i had for my IBS has stopped working and i think that i've had endo for 12 years. I have been told that when i have my op i will be fitted with the mirena coil. Thanks for the tips xx

[Sades]

Hi i take Mefenamic acid too its like a stronger ibuprofen, to help reduce swelling of the endo which in turn helps the pain. I also take laxado to help soften stools. My pain was unbearable but the mefenamic acid really helps especially if taken with paracetomol too. Hope you find a pain relief that suits you soon x

[daffodil]

Just looking through posts -wondering how you are doing?How is the pain?

[Leeshaun in reply to daffodil]

Hi Daffodil

I'm doing it well thanks all things considered. How you feeling? Doctors have now given me different medication to help with the pain (now taking tramodol) Have been given another appointment at the hospital as i am having more and more time off work.

How you coping with the pain?

Thanks for asking xx

[daffodil]

Still in pain ,but I do believe it is a bit easier.It is now 3 months since my depo jab and I am hoping it is now kicking in! I go for my next one on Tuesday. I am still awaiting gynae and surgeon appointments,re the adhesions which are causing a huge amount of pain still.

Hope the Tramadol is helping you?