Shwmae Endo Sisters xx

[EndoSis]

Hi All at Endometriosis UK 😊

My name is Sarah, I'm 29 and I live in Wales. I was diagnosed with endometriosis at 18 following many painful and confusing teenage years. I have had 3 laparoscopic surgerys, the last one in November. I currently do not take any hormone based therapies as I am hoping to start IVF early next year... However in the last 6 months my endometriosis has definitely got worse. I regularly now get hot flushes extremely painful and heavy periods (more so than before), awful and sometimes uncontrollable PMS and a very painful lower back and left hip and what I think is sciatic pain in my left leg especially when sitting and walking. My doctors have been giving me a lot of pain killers - the latest 3 weeks solid I have been using phorpain ibuprofen gel, freeze spray, was taking co-codamol, diazepam and lanzaprozole (to help with stomach pain from the naproxen). I have been going to work but feeling in pain (and a bit high) most of the time and despite all of the above have still needed a hot water bottle. It's been really stressful being in so much pain for so long... I went back to docs yesterday and they have now replaced all the separate painkillers with oramorph and senna (for my sore bottom 😶)...

I am today finally submitting and have taken a day off to rest and have stumbled across this forum 😀

I guess what I would like to know is;

1. If anyone else has had this type of back/hip/sciatic pain? It's driving me crazy! I have asked my dr if it could be endo on my bowel/causing pressure or obstruction to my nerves. She says this is very uncommon. So I am frustrated to not know what is causing this intense pain.

&

2. Does anyone one else get hot flushes? Is this normal or could this mean I could be close to early menopause?

3. Has anyone tried acupuncture for pain relief and would they recommend?

Any help and advice or just reassurance would be really appreciated x x x x

[Simo7]

Hello! Sorry that you're in so much pain, it's horrible isn't it. I was just reading on a FAcebook group called Endometropolis about B12 deficiency and thyroid problems. This and other vitamin deficiencies can cause some women to have hot flushes. May be worth looking into?

Did you have excision surgery or ablation? Also was it with a specialist in Endo or general gynaecologist? It may have been missed.

As for endo on the bowel, I'm not a Dr but I don't think it's uncommon. I'm awaiting surgery with a bowel surgeon on hand invade it's on my bowel. I get sharp bowel pains, not only on my period but all month. I did have surgery to remove adhesions to the bowel, so I think there was endo there that wasn't dealt with as I still have that pain (awaiting excision this time). I also used to get bad sciatic pain down the back of my left leg. That's not bad now but anti- inflammatory used to help that if I got it in early, at the slightest niggle. I have sharp pain in my right side that takes my legs out I think this is related to endo on the ligament there (it was previously ablated). I've read that people with adenohmyosis also get lots of hip pain, I was recently diagnosed with this so it may be related?

Next question! IVF before I had mine I had acupuncture a few sessions for pain & to help conceive. (We have a lovely little boy & then got lucky naturally with a second little boy) I've always felt that the acupuncture helped a lot with the stress which helped cope with pain. I've know a few women who've had fertility problems & acupuncture to help conceive.

Good luck, these are just my experiences and yours may be very different but it's worth doing more research to get yourself the right help. Wish you well xxx