Experienced endo sufferer

[Carolamb]

Hi everyone..joined this group as a sufferer myself and thought i would give you an insight about me and maybe some help to those suffering with endo. Im 61 and was diagnosed in my 30s. Same story as everyone else..heavy periods, back pain, migraines, bowel and stomach issues. Was on the pill from age 16 to 30 for heavy and irregular periods. Was pushed from pillar to post with gps and finally after a scan and hysteroscopy was diagnosed with endo. In those days there was no internet so i had to read up on treatments. After using many different hormone meds that did nothing i was put on zoladex which was relatively new in those days. It was my life saver and i continued with it for many years without hrt as that made the endo worse. I led a pretty normal life on zoladex, no periods no pain but it took about a year to stop all pain and spotting. A few years ago i found a fantastic gynaecologist in london who wanted to remove my ovaries as my mother had died of ovarian cancer and he was keen for it not to happen to me. My womb was adhered to my bowel so he advised against surgery at this time in case it resulted in a colostomy. My ovaries were pretty much tangled and adhered but the op went well. However i started having sort of periods afterwards and my fsh levels were high for someone who had no ovaries. Scans were done but no remnants found. Blood tests, endocrinologists found nothing wrong and my gynae is flumaxed. However, having been treated in the past for migraines with homeopathy and cured i went back to my homeopathist who believes my body could be reacting to all the hormones i have taken since i was 16, suppressing them and now my body is confused. I am now taking a remedy that is helping me. So what i would like to say to all you young ladies, please don't suffer in silence. Go back and keep going back to your gp until they are sick of seeing you. Change gp (i did) if they are not listening. Choose a gynae thats an expert in endo, you have a right to choose which hospital you want to attend. Personally i prefer London hospitals if possible. Look up reviews of specialists in this field and get yourself diagnosed fast, keep pestering and don't give up hope. If i was young and just diagnosed i would turn to homeopathy or alternatives first. It does take a while to get the right remedy to suit your body and illness. I would also look at your diet and stress levels. If i eat the wrong foods i feel bloated and worse. If im stressed it makes me worse. I hope this has helped you..but remember please don't be fobbed off. Keep on and on to your gp and consultant. If you can afford to, go private to get diagnosed then transfered to nhs which is what i done. Good luck for your future ladies x

[Justkate1702]

Hi this is really interesting...im 29 and diagnosed last september but i believe iv had endo for years but just got fobbed off with changing pills try this try that. In the end i took it upon my self to stop all medication and myself as a person feels so much better. Iv had my laraoscopy and do believe the surgery has done some good but still get the tiredness, ibs, diahorrea, painful legs and 7day bleeding. But on the positive i know my cycle like the back of my hand now. Im really interested to know what you tried and use for alternative therapies? Kate x

[Carolamb in reply to Justkate1702]

Hi..i tried chinese herbs but im afraid the smell was about as good as the taste, awful, tho it might help if you can tolerate it. I was first on danazol them provera, neither worked and i put on weight as i was so hungry all the time. Finally used synarel which was fab but due to a manufacturing problem went over to zoladex. It took many months to calm things down and you are supposed to only be on it 9 months max. Because i felt so well on it i continued for many years. I have osteoporosis now due to being on it for so long but im fine. Im now monitored with dexa scans and take vit d and calcium to help. I first used homeopathy for my severe monthly migraines and despite seeing drs and consultants for it and lots of meds it had no effect. Within 8 months of seeing my homeopathist i was cured. Due to my recent endo problem i went back to him and im now taking a remedy called Sabina which is helping. He said he could have helped me with my endo had i seen him many years ago and im a great believer in alternative meds. Diet and stress play a major part with me especially stress. O have a sweet tooth unfortunately and too much sugar aggravates my stomach, bloating, pain etc so i have to be careful. Hope that helps xx

[Starry]

I would just say that I don't live in London and neither does my surgeon but I have had absolutely fantastic treatment that's been second to none, both surgically and in their consultation, written communication and pastoral care from my regional accredited BSGE consultant throughout my diagnosis and very complex excision.

I agree it pays to research a surgeon well. But simply living in London isn't a valid criteria for deciding a surgeon is good. Their BSGE accreditation, endo experience and a solid consistent reputation is.

For me as a complex case, having to travel only 30 minutes down the road rather than halfway across the country was in addition a godsend when having done a bowel prep I was projectile vomiting all the way to the hospital having unluckily reacted to pico lax and also when being driven home after surgery absolutely shattered.

[Carolamb in reply to Starry]

I totally agree if you find a good surgeon in your area then thats good but for me my local hospitals are not good and i live near to london. I was recommended to my gynae by my cousin and saw him in harley st privately as i had cysts on my ovaries 5 years ago and was worried about cancer as my mother had died from ovarian cancer and he is a cancer specialist. I had a scan done at harley st and evetything was fine just normal cysts. Due to other problems i was transferred to him on nhs. Thats not to say that there are good gynae consultants in local areas but my preference is the london hospitals

[Emmyeve]

Lovely of you to share your story. I think diet and lifestyle is the answer to this horrible disease. Xx

[Carolamb in reply to Emmyeve]

Thank you..definitely upsets me if i eat too much wrong foods. Im not a meat eater really but if i have spag bol or beefburger i really suffer..didnt realise red meat takes longer to digest which is prob why i get problems. Cant eat brown bread or wholemeal either tho i love it x

[Emmyeve in reply to Carolamb]

I think meat definitely effects it but sugar gluten and dairy are the main culprits. Together with a lot of grains and starchy veggies. Allergies and Candida can make things worse too. X

[Carolamb in reply to Emmyeve]

Yes i agree. Unfortunately they are all the foods i love. Sugar, dairy etc and raw onions, pickles. I have to make sure i don't eat too much of them. Nightmare!