Need Help on Pain relief/Other Options for Endo!?

[LaurenD]

It is believed i have endometriosis, and i may have suffered with it for many years (im 19 years old).

I am due to go in for a laparoscopy on the 23rd March to investigate.

I suffer from excruciating pain (i become faint, cannot move or talk and have to lie on my side in the fetal position until it relieves which can be hours) and irregular periods, however due to my previous history with side effects from both the combined pill (severe migraines and TIAS) and the mini pill (severe acne) treatment, these are not options to help control this and so pain killers might be the only option.

I have also been diagnosed with IBS, however this can apparently be linked to Endo.

Can anyone please help, what medication/pain killers are available and that might help!?

I have tried paracetamol, ibuprofen, buscopan and mefanimic acid but they just dont touch it!

[Hope22]

Hi LaurenD,

Sorry to hear youre going through such a rough time of it! Like you, Ive yet to be diagnosed with endometriosis, although my doctor feels its very likely that's what I have.

Im sorry hormone treatments dont agree with you. That must really suck! Ive been perscribed the depo provera: you have it done every three months and its been quite effective at stopping periods, or at least making them alot lighter from my experience. You say youve tried both the pills. I had problems with migraines on them both too (as well as horrible periods!), but have you considered the depo injection? According to my doctor it seems to be the most effective in reducing the regular pain because of its ability to stop your cycle pretty quickly.

Do you have an understanding doctor? That can do the world of good in my opinion. Regarding the pain youre in, Id advise really pushing your doctor for something alot stronger. I was on regular co-codomal for my heavy periods which were barely touching it. I was put on strong co-codomal (30mg), but then changed to just codeine tablets recently as I have a problem with my liver at the moment and paracetomal can only exacerbate it.

Also, if youre in pain everyday, your doctor really should be perscribing you something to help you cope. Especially if youre visiting them about it on a regular basis.

I hope this helps you in some way, and that you find the answers and relief you need soon. Chronic pain is a terrible thing to deal with and talking and sharing can really help!

[LaurenD in reply to Hope22]

Yeh it really does suck, im off to University in October aswell which is daunting because i dont want to be suffering with severe pain all the time whilst at Uni!

I have been seeing my GP since i pretty much started my periods age 12. I have suffered horribly with them, and it was just pill after pill that didnt work, and then getting diagnosed with IBS age 16 its all just a lot to happen whilst being so young!

My pain can occur at anytime, theres no warnings or anything and so taking painkillers a couple of hours before the pain starts (which is what my GP suggested before referral) just isn't an option. The pain can happen anytime of the month, worse the day before a period, but can also happen when i miss a period.

I think my GP under-estimated the pain i was actually going through, blaming it on my IBS flare ups, but i know its not that kind of pain. Luckily, my dad has insurance with BUPA, and so I asked to be referred as nothing was been done.

I have just seen a private consultant last Monday, who is doing a Laparoscopy on 23rd March, she is very understanding and has said if i ever need to talk to her i am more than welcome to call her.

Next time i see my consultant, il have to ask about these different things you've mentioned about! Thankyou for replying!

[M1ssy]

Hi laurenD. I wish I was diagnosed at that young age. I'm now 37 and have no children and have just been diagnosed. My doctors are not as good as I thought they were and thought my health was in good hands, but we now have all this technology at our fingertips

Co-codomol was not as effective for me as Tranexamic and Mefenamic Acid tablets. I take these for my pain and excessive bleeding. They have saved my life! I was diagnosed in August, together with IBS. For years, during my periods I couldn't urinate, pass stools or wind without grabbing the toilet seat or the side of the bathtub whilst holding my breath and sweating profusely, trying to push in a controlled fashion! My friend who's had a child told me that it's like I have mini-labour pains each month! At work, trapped wind is terrible and passes suddenly and I have to stop speaking, moving, even breathing. I can't move a hair follicle! At night, trapped wind wakes me out of my sleep and how ever much I breathe or concentrate on the wind pockets moving through my colon, it wouldn't budge. Walking is very difficult as I have to tip-toe everywhere around my house and grab the walls and radiators for assistance. I had it really bad for years until these last few months taking these tablets. They're fab. I still feel some discomfort but not half as much as before.

Hope you ladies can get it prescribed or something similar for your pain.

Oh, I had a laparoscopy in November 2012. I needed an MRI as the surgeon said I had extreme endo. If I had known earlier about endo, I would have stopped my periods. Each bleed/period leads to a scar in the womb. Had I known this, i would have taken depo-provera too. I instead went for the combined pill which still allowed me to have periods. Just remember, each bleed keeps the endo alive.... I must do a blog

[Abbs]

Hello, am so sorry that you are going through such pains but unfortunately those painkillers you mentioned are not going to stop the pain, well the only painkillers my gyne recommend for me is fentanyl patch which is a very strong opiates that give you long time pain relief for 72 hours before you change it. I have been on it for over a year, speak with your doctors and see if its a good ideal for you. But pls be careful since you suffer from side effects from medications. Good luck and you are not alone

[psychosue]

Hi LaurenD, I feel your pain. I suffered really bad when I was younger before I diagnosed at the if 36. I was on the depo pill injection every three months from when I was 18 - 27. It help because I period was my lighter and almost stopped.

I have all they pills, mefenamic was the only one that worked for a while, but they told me off that as they thought it was causes by IBD flare up. They had me on co-codamol and nortriptyline but it stopped working, after a terrible painful weekend I'm off to see my doctor tomorrow to review my meds.

I suggest you keep going back to your doctor and I have an app in my phone so that I track my symptoms.

I hope get some better pain relief soon