Help

[Nennifer]

Hello all!

So I'm 26 and for the last 4 years been suffering with all the symptoms to endometriosis. I have been on the floor crying my eyes out in pain and I don't do crying! Sex is a massive no go for me. Periods were unimaginably painful, going to the toilet is a nightmare sometimes, I'm constantly tried, bad back and annoying stabbing shooting pains going down my legs, mostly the left. I went in and out of my GP, countless trips to A&E and then finally they said I maybe suffering from endometriosis. I had never heard of it before. So I googled it and saw that I have all the symptoms. So come early 2016 after doctors prodding and poking me (and resisting the urge to punch the doctors whilst they did this) I was referred to have a laparoscopic surgery. Unfortunately they couldn't find a thing. But before I went under they suggested I have the marina coil in the hope to help with the pain. So they put that In as well. This was in March 2016. And since that day things have been getting worse. Again basically living in my local GP trying to get some sense out of them, after being told it's IBS and to try something for that. Trying IBS tablets with no joy. A doctor took me seriously and referred me to a gyno. I was put on a waiting list then beging of this month I received a letter saying that my appointment that I never knew I had, had been reviewed and was told I need to go to my GP. Fuming i ring my doctor and was told she'd sort it. I finaly received a letter today (21st June 16) saying that the consultant gyno, under whose team that i had my laparoscopy with had suggested that I be referred to a pain management clinic. And she was very sorry to hear I'm still suffering with pain.

So I'm at a loose end. What the flip is a pain management clinic? And surely they should find out what's causing the pain? I'm still convinced I have endometriosis.

Has anyone else suffered with this? Had laparoscopic surgery found nothing but later on diagnosed?

I'm about to loose my last marble!

Thanks for reading

Jennifer

[CRODRIQUEZ]

Omg I pretty much have all the same symptoms. Chronic lower abdominal pain the is present on both sides. Pain during sex (and I've had the same partner for 20 years). Pain during orgasms. Abnormal heavy bleeding. Pain after bladder emptied. Pulling/tearing sensations...

Numerous test and doctors. Close to just having a hysterectomy due to lack of options and constant pain.

[Nennifer in reply to CRODRIQUEZ]

It felt like for long time that my coil was trying to work it's way out and tear the crap out of me. Had scans but its where it should be. If I had a child I'd be tempted to have everything removed. It's so hard to live my life with the pain! I'm a very active person. I work on a farm and as a dairy rep so I'm constantly on the move. And it's making it so hard to carry out my day to day life!

[seg86]

Have you got the details of exactly what they examined in your lap? Endometriosis can hide in several places. I'd recommend checking to see what they examined and get a copy of the photos they took. You might also need a multidisciplinary team to rule out bowel endo. My first excision was incomplete as they did not look enough, essentially. I had to go for another operation not long after to remove further endo.

[Nennifer in reply to seg86]

To be honest I was still half away with the fairies when the doc came to speak to me. All I can remember is them saying they had looked at my bowels and everything else but couldn't see anything. I had an ultra sound week or so ago to see if they could see any lumps or bumps. But all looked normal.

I'm so tired all the time. I'm getting between 6-8 hours sleep a night finding it harder and harder to get up and go and find my self falling asleep all the. I don't feel tired it's just my eyes get heavy and I find it hard to concentrate. I'm always hungry but can't really eat much as I feel full so quickly. And always feeling sick! I have to go see my docotr again soon for blood tests so I'll ask for everything then thank you

[katiebaldwin]

Hi,

Pain Management Clinic is to manage the pain that you are in. I have endometriosis and no tablets helped. I eventually had Laparoscopic surgery where they burnt the endometriosis. I went to A&E as the pain was so bad and admitted on to a ward and from there they arranged for me to have this surgery.

doctors will fob you off with tablets so be careful.

[seg86]

I had a coil inserted that caused me excruciating pain. I had 4 hospitalisations before they agreed it might be the problem and I had it removed. After that the really acute pain stopped. My best advice is trust your personal judgement on this. You know your body better than a doctor!

[Patricia2015]

Hello Jennifer,

Poor you!!

Unfortunately your story is very similar too mine with the difference I almost suffer for thirty years now...I am 42.

They missed endo and adeno in two laparoscopies in 2011 and 2014 and they told me it was all in my head, even the daily bleeding for a year long. In 2014 my excellent new gyno discovered extensive adenomyosis that caused horrible pain. Four Esmya courses kept it under control until a few months ago my pain got worse and it is now simply hellish.

My gyno sent me for a MRI (no contrast) and a day later I was called by him. They discovered multiple deep infiltrating endometriosis. I am now sent to special endometriosis clinic but my appointment is end of August.

I went to my GP showed my MRI report and she immediatly suggested morphine painkiller Oxycodon. So I now have that in house and laxatives(!). And my gyno subscribed me Yasmin pill to make sure my endo is not worsening till August/Sept.

Keep in there girl!!

[Nennifer in reply to Patricia2015]

Do you think there is something I could say to my GP to get some specialist help? Thinking of going private.

[Patricia2015 in reply to Nennifer]

Your health is worth a million so yes go private.

And tell your GP that you strongly feel you have adenomyosis and you would like to go to a specialist for that or get an MRI for that. Tell your GP Adenomyosis explains all your symptoms and can not be discovered laparoscopically as it is inside the uterus.

Good luck!

[caroljane80]

sounds like my life at the moment. I wasnt that bad til i had a hysterectomy now im some where on a level to your pain sadly. It stinks i swear they did something ( cant say too much cos court case pending ). Anyway id get that coil out if i was you they hurt like hell it could be that. They are heavy drugs but tramadol with paracetamol and im now switching to oxycontin sustained release give more releif than otc drugs or co codamol although you can get higher strength codeine 30mg per tablet . Watch the constipation with them though lactolose can soften the stool to get by. I dont know whats going on medical proffession seem to have gone mad. Maybe if you can face it could you have a laparoscopy elsewhere with an endo specialist ( as they often miss stuff and also it can be on bowel which is still totally ignored alot it seems ). Also be aware that further laps can cause adhesions which are also if not more painful than endo. Si ive been told its a risk sometimes not worth taking. Maybe try gonadatrophin agonists see if you can have a bit of a break with them although they create a temporary fake menopause i was actually ok on them but i feel very ill an din lost of pain after a total hystorectomy with ovary removal ( which wa ssupposed to be exactly the same !!!) yeah right!!! cheap more like and devastated my life. I cant get any answers privately either i swear they are closing ranks on me . This pain i have cant be from nothing which they are now trying to say it is, Wasnt anywhere NEAR this bad before this damned hysterectomy. Anyway im miserable sleep deprived scared bu i hope this helps you a little maybe try the pain meds and /or zolodex etc xxxx

[Patricia2015]

Like CarolJane80 says. Take opiods but always take laxatives with these. I cannot tolerate lactulosis as I am lactose intolerant but magnesium hydroxy tablets and metamicil helps.

Tramadol made me feel terrible sick and even more constipated than the stronger oxycodon (retard type and quick working type).

[Nennifer]

Thank you all for replying and your advise. I've got lots if things I can say to.my GP now. Thank you for all your support as well. I've been made to feel like it's all in my head and that there's nothing wrong with me x

[LeaneWright18]

Hi Jennifer

I have had almost word for word the same experience as you. I had lap in April they removed a cyst and said my uterus looks healthy.

My pains are identical to yours and going to the loo is excruciating, I bleed almost every time too.

My GP has referred me to gastroenterologist for colonoscopy but I don't have stomach problems, my pains and symptoms correlate with my cycle and I have every endo symptom, in pain daily.

Feel stuck going for consultation after consultation and lots of tests with no answers all the while wanting a baby but struggling with conception (I'm 32 and don't want to have to wait much longer!)

If anyone has answers to help Jennifer I'm hoping they might help me too.

It seems so many of us feel stuck and struggling to get a diagnosis.

So grateful for this site!

Leane x