Extremely painful endo!!!

[Natalie732]

Hi there my names Natalie and I've suffered from endo for about 5 years, I had three laps diagnostic and treatment between the ages of 18-20 after my last op at the age of 20 I had 2 years symptom free! At the end of last year however my endo returned with a bang serious pain in my abdomen, persistent heavy bleeding, pain when I emptied my bladder, blood in my stools you name it I had it! Went in for my diagnostic lap on 4/2/14 which they found lots of endo spots, adhesions and cysts! The most serious was that my uretera tube was covered in endo and was actually closing up as a result. I have to have a second treatment lap to have a cystoscopy and stents inserted into my uretera tube as well as the removal of cysts and endo. After the diagnostic lap I have been in agony, can't pass urine properly, can't sleep I'm in so much pain and am now on OxyContin as a result which still is doing nothing!! I'm still waiting on an appt for my op but I'm just at the end of my tether and I really don't no what else I can do to help myself?? Using hot water bottles but now have mottling of the skin and blisters, just don't no what to do!!! Any advise from anyone about what I can do would be really helpful? Natalie x

[curlyjo]

Hi Natalie, I just looked up oxycontin and it says it's a moderate to severe pain killer so you haven't got to the top of the painkiller scale yet which should reassure you, because there are obviously painkillers out there for persistent chronic pain like yours which hopefully will hit the spot. My friend is a nurse and she warned me of the dangers of mottled skin with hot water bottles.. (do be careful; I burnt myself like this too and it does eventually go!)..but if I were you I'd get to the doctors as soon as you can and ask for something stronger. When my symptoms kicked in the first worry for me was to kick the pain on the head so I could return to work. I'm a school teacher and was in the middle of writing the pupils their university references when my pain kicked in. I remember ringing the doctor one morning in an absolute state cos nothing seemed to shift it. She signed me off for two weeks while I experimented with various drugs and got myself back on an even keel. The only thing that worked for me was tramadol, mefanamic acid and paracetemol. Plus omeprazole to soften the blow on my tummy. Tramadol has a few side effects (I need a lot more sleep) but for me they were minimal because of the chronic pain I was in. And I was able to return to work which was the main thing. Even now (post lap) there are days when it doesn't work but my endo is in the muscle layer so is not treatable by surgery. When I read your story I was wondering why the endo grew back so fast and you were only 2 years free of symptoms. Did you take the pill during this time or were you having a normal cycle? My surgeon told me that the reason it took until my 40s to show up was that I'd been on the pill for 10 years earlier in my life. Evidently the pill puts it all to sleep.. might be worth considering if you haven't already. Anyway I do hope you get pain free soon and your endo cleared again too; let me know how you get on. x

[misty528]

Natalie I suffered with endo for 11 years four lap surgeries a hysterectomy and 4 different doctors and still nothing... I was like you not really knowing what to do anymore it almost felt like no one would ever be able to help... I didn't give up tho right after my hysterectomy I started feeling the pain as soon as I was pain free from the surgery I then went to the er and they pretty much told me they could do nothing to help only refer me to a pain management clinic which I said no I didn't want to be on pain meds for the rest of my life... I was on a mission to find someone that could help I finally found a lady obgyn in my city that would take a look... Took me a month to get in to see her she wanted all ct scan and ultrasound I had since it started... She did a ultrasound and said that it was in the lining of my stomach no one ever thought to look up when they did all those lap surgeries... When as he went in she thought it was a small spot that she would be removing 3 x3 cm said it would take @45 mins to get the surgery done by lap well almost 5 hrs later I came out of surgery they removed 16 inches across and 6 inches up and down it was in the lining and the muscle... I have now been pain free for 8 months so never give up hope my doctor said she had never seen someone with so much endo... So I'm living proof that there is a way besides pain killers to live a normal life... And to curlyjo mine was in the muscle as well as yours so see if maybe u can get a second or third opinion just keep going till you find someone to fix y'all!! The best of luck to u both... Xoxo

[vonie]

Hi natalie, im so sorry to hear the pain your in, I also suffer severe endo and been told surgery not an option for me as to dangerous. I know the pain you describe, I get gabapentin daily as well as naproxen and tramadol. Instead of hot water bottle ask for versatis lidocaine pain patch, they are good, also I bought a tens machine, best £40 I have spent. I wont lie, it doesn't stop the pain completely, bad days are still terrible and good days in way to short supply but I can function to an extent which is a huge improvement on where I was before. don't be scared to tell your gp what doesn't work for you and make sure you get the omneprazole to protect your stomach

[Natalie732]

Thank you all so much for your replies, it really helps to know I'm not alone! I finally got told today I am on a waiting list for my treatment procedure so hopefully this nightmare will soon be over! I have been taking the micrognon pill since being diagnosed at the age of 18, through the ages of 18-20 I was on it continuously with no break and then when I became pain free I still remained on it but had the 7 day break, then when I started getting symptoms again in September I started again using the pill back to back but still bleeding! I am also on gabapentin to help with the nerve pain, thanks so much with all your ideas to help with my pain I will definitely try them and try to lay off the hot water bottles! Hopefully like i said by the end of this year I should be on the way to pain free