Life, diagnosis, drugs.... a bit of my life!

[Butterflyblubum]

*long story sorry* After 10 years of severe pain and being told it was in my head... a lap finally diagnosed endo. After op, pain never totally went but improved, however this was only for a couple of months then it began building up again. Within 6 months it was back to it's usual full force. The gynae at the time said it was ridiculous, wouldn't happen and I shouldn't need any pain relief other than panadol!!!

Over the years I've neen messed around like hell (by Drs that think they know about endo) and tried all sorts of drugs to help. The worst experience ever was being put on duloxatine for my crippling back pain. It's supposed to work on neuropathic pain.... messed with my head terribly, the worst part was coming off it, I needed to wean for weeks, I withdrew and was almost hospitalized as I was suicidal. Very very scary time- previous to this I had no mental health issues or significant depression. I have tried endep and it did work temporarily but then stops it's effectiveness- didnt like being on this either. Tried tramadol but as it also effects seratonin it wasnt good for my brain and caused anxiety. At one stage pain so severe I tried morphine patches.... made me feel nauseated and I couldnt get over feeling like a druggie. Mersyndol forte was good as has a mild muscle relaxant in it. Can no longer get normal Panadeine or neurofen plus OTC- sux. Voltaran suppositories ok but leaking the oil at work is not pleasant. Been on and off the pill to suppress periods but bp high so No longer can take.

My periods are hell- heavy, extremely painful, every 21 days and last for 9! Ovulation just about kills me- generally bed ridden for 3 days prior. Pain between my vag and rectum so severe I have difficulty weeing, wind and can't poop due to pain. Every other day I am NEVER pain free, it just varied in severity.

I believe being on the pill at 15 was what saved my eggs and some uterine integrity allowing me to have 4 beautiful children. I have had 4 miscarriages also.

Along with endo I have severe GORD gastro oesophageal reflux disease, IBS, chronic thrush, fatigue and now I guess depression and anxiety when endo flare is debilitating .

I work in a busy job that is both physical and mentally challenging.

I have a husband and 4 children. Thankfully my husband is a supportive gift grom god to me!!!

After all these years of absolute hellish pain I get quiet anxious and depressed at times- not on any meds for this.

I take various anti-inflammatories but carefully as my reflux is so bad. Also take Panadeine forte or Endone when pain flares.

I've spent thousands on physio, chiro, dietician..... an endo diet or paleo is helpful .

No analgesia fixes my endo pain for good, it just helps me get by and pretend to be normal so I can function- try to be a good mum, try to be a good wife and go to work.

Much love and thoughts to all suffering.

I hope my post helps others understand one woman's aspect.

Seeing a new specialist in a few weeks as preparing for hysterectomy.

Xx

[Louiseboo77]

Good morning. You have been through a lot over the years. It's an awful condition and I think it's made worse by people that are supposed to be helping you and know what they are talking about. All the messing about and cancelled appointments and being told things you describe is either in your head or something else. I am pleased you have a good husband and 4 children. It makes all the difference. I had a husband that used my condition to treat me badly. Me and my children hare happy now. He is my ex husband and I have someone new who really understands. I am pleased you are getting your hysterectomy. I hope it helps and you get your life back. Enjoy that lovely family of yours. Bless you. I have been told I am not allowed one. Too dangerous. I hope you get sorted and feel better soon. Good luck with it all and take care of you and your family. Xx

[hm89]

Sounds like you're doing an amazing job holding it together despite all this pain!

Thanks for sharing about your children and miscarriages, it's good to know if people do suffer that it can still happen for them.

I hadn't considered paleo as I'm not a huge eat eater but I know dietary changes will help, it's just so hard with an Italian boyfriend!!

[Chinaxo]

You have been through so much. Sending you love and strength xx hope the new specialist is good for you and a hysterectomy will get you pain free. Fingers crossed for you