Newly diagnosed mild endo. Horrendous pain daily. Any advice on what painkillers work for U? Any foods I should avoid to help?

[Carolan123]

Hi ladies so I had my lap last month after battling nearly 3 years of pain and infertility. My lap was negative but biopsies were taken. Had my follow up with gynae consultant today and have endo on my left ovarian fossa. Everything else is perfect including my womb, tubes, ovaries, bladder. I wee about 20 times a day and 3 times a night so consultant is referring me to urology. For possible cystoscopy or bladder training. Anyone else had this? I get a lot of pain.

I'm in constant pain daily, can't sleep most nights. I take mefanamic acid and co codamol but it doesn't get rid of the pain. What pain killers does every one take?

We've been trying for baby number 2 for nearly 3 years now and no one knows why I can't get pregnant. Consultant has said the best way to help my pain is depo or mirena but because i want a baby they're not currently an option.

Any particular foods I should try and avoid?

Any support or advice would be great. At my witts end with this pain!! X

[MissyMe2]

Hi Carolyn, is your dr a specialist in Endo? Many general gynaecologist can not recognise endo even when they do check via Lap. The best place for info is a FB Page Nancy Nook. Read the files, there some great info.

Endo has been wrongly treated and dismissed for years and there’s only a small amount of drs who truly understand how to recognise and treat this disease.

Endo is like an ulcer on your tongue, tiny but extremely sore. Put that ulcer on a nerve and it becomes even more painful..... which is why some woman at stage 1 can be in terrible pain yet woman at stage 4 very little. It just depends where it is...... I’ve spent the last 3 year researching endo and I can honestly say. It so important to get the right dr. There’s also lots of specialist listed on the Nancy’s Nook files.

For pain I often found 500mg of naproxen or 500mg ibuprofen. (Not together)

Also some type of dissolvable codeine& paracetamol tablet with the above helped.

On the really bad days your never going to be pain free. Some people say a hot water bottle helps, I often found I was to sore even to use a hot water bottle so put heat packs

that are for your back & instead I stuck them to my stomach. Help when I was at work as well

Also as the years go on your body becomes more tolerant of the pain medication, so use it wisely.

What I also found helpful was a high does of turmeric, 2 teaspoonfuls or roughly 4 high strength tablets. (Takes about a month to really feel the difference)Your body’s response to the endo is what becomes destructive, particularly inflammation which will also cause scar and adhesions.

Hope this helps I might see you over on fb

Paula

[Carolan123 in reply to MissyMe2]

Hi Paula thanks so much for your reply. I've requested to join the fb group so thanks for that, so new to this and be nice to talk to others. My consultant is gynae but specialises in endo. She's really lovely, understanding and reassuring. She did say that about the fact mine is mild and about the amount of pain it causes me and I suppose the fact everyone's different.

Thanks for the painkiller tips xx

[MissyMe2 in reply to Carolan123]

Good luck. There a lot of info on the pg, it takes time to read it all.

I had bladder problem as well it’s. It’s not easy xx

I went to urology for years and had scopes investigations etc. It never came to anything no one ever thought it was link to endo as it’s more common for endo to be linked with bowel than bladder. Last year I had surgery to remove endo they where surprised to find endo nodules on my bladder and surgeon said all viable endo was gone. Unfortunately he was wrong...... I’m a week post op/2nd surgery endo was found growing on ureter, and tangled in the the nerves between ureteral ligaments and nerves (1st surgeon never seen it because they didn’t have the skill level to go that deep )

[Carolan123 in reply to MissyMe2]

Oh bless you you've been through so much. Hope you're recovering ok. Big hugs xx

She showed me pictures of everything inside and there's nothing she could see on my bladder etc so we shall see what urology have to say.

It's so draining physically and emotionally everyday but I power through. Defo gonna get the heat pads for work...forgot about them as used to used them as a teenager for period pains at school! X

[Vickicanny1]

Hi carolan, i had a lap on monday, been trying for another baby for 5years, lost 3 babies an didnt know why, i wee constantly too with burning and severe pain with bowel movement, i used to have cystocalm sachets to try ease the burning and pomegranate juice. Im still in alot of pain at the minute but i was hoping the surgery will of helped my uterus and bowel.

I am also currently trying for my final baby so cant go on the marina coil yet the surgeon has given me a six month window in which they advise i try for a baby so fingers crossed.

I hope all goes well for you carolan x

My surgeon advised to look at a vegan diet if i could

As most meats contain estrogen that can cause endo

And to try eat less sugar and caffine

So going to try eat more veg and less meat see how i get on

[Carolan123 in reply to Vickicanny1]

Hi Vicki

I have been cutting down on caffeine and acidic things to see if it helps.

So hard wanting another baby but will give myself a year I think then I'll get the mirena coil I think.

Thankyou and hope all goes well for u xx

[Char411]

Hi,

I had my lap last month and was smothered in the stuff. Pain wise I use an electric heat pad (I suffer terrible back pain) and I take tramadol, it doesn’t take it away but it can take the edge off. Anti inflammatory diet is advised for endo, so no sugar, caffeine, alcohol, processed foods, red meat, dairy or gluten and soya... doesn’t feel like it leaves much lol. I have found alcohol to be my biggest trigger, one glass of wine is ok, however spirits or too many glasses of wine and I’m in agony the next day. Uterus feels likes it’s trying to burn its way out of my pelvis and don’t even get me started on the chronic diarrhea. I think trial and error is best to see what works for you as this damn disease effects people so differently.

Best of luck and big hugs xx

[Carolan123 in reply to Char411]

Thanks for all the tips. Defo gonna make some changes to my diet. Already switched to de caff tea which was easier then I thought as I do love a cuppa tea lol.

Bless u hun sending u big hugs too xx

[veneerofclass]

Hello Carolan, I'm so sorry to hear that you're going through so much pain on top of everything else at the moment. In regards to painkillers I personally used to use mefanamic acid but found it did nothing for me. I'm now on tramadol 50-100mg (or codeine 45mg and paracetamol when the pain is less) and 250mg naproxen. Going on these meds instead has honestly made a huge difference without being on something like depo or the mirena (as my doctors don't have anyone that does that). I have endo mostly on right ovary if that helps you to know.

I hope knowing some other options is helpful and you get the best combination of painkillers for you soon and that everything goes in the right direction for having another baby. Xx

[Carolan123 in reply to veneerofclass]

Thankyou for the reply. I found tramadol didn't touch the pain...all it did was help me sleep. I take mefanamic acid and co codamol as and when. Consultant said to try and switch to ibruprofen and paracetamol but I don't think that will do much. Will see and might ask for naproxen. Hot water bottles help at night.

Big hugs to u xx