Endo to end all Endo!!!

[valgal76]

I had a bad turn today, i was busy watching tv, when i had the most horrid griping hot poker in my left groin pain. It made me gasp, so i took a painkiller. Does anyone take anything else for it?. Is there a better painkiller than co-codamol. I've just had another pain as i type. Why won't it leave me alone. I'm menapausol now, so why do i still have Endo????. Any answers most welcome, i just feel so alone with it sometimes

[Lindle]

What stage do you have?

[Shell1212]

I'm sorry to hear your not having a good day. I totally understand as I've had similar pain. Like someone's put a knief into your pelvis. I am waiting on seeing someone at pain management, however, this seems like another long wait. I am on codeine and ibprufen. These don't always help. Please go back to your GP and get something stronger if your meds are not working.

Take care x x Shell

[valgal76 in reply to Shell1212]

I used to be on Ibrufren, but can no longer take it due to blood issues, so i am thinking of talking to my doctor about other pain killers or upping the ones i have already. Just hate it all

[Shell1212 in reply to valgal76]

It's all grotty. For me, think the most frustrating part is how long everything takes. Your not on your own . I'm here if you need an ear x

[635703]

Yes, the isolation is awful isn’t it? Not knowing what to do and keep positive and strong is exhausting. That’s when I Netflix away to forget 😉

It’s finding a good enough solution for yourself. This is my 18 years experience and honestly I can offer you today lovely ☺️

Chocolate 🍫 always helps me 😆 and whilst I can’t say it takes away the horrid stabby hot poker pains, it tastes good 😊😂🤣 Most of us like it. I am also a crisp lover.

A piece, a small bar, a big bar, a box of chocolates - whatever has made you feel joy and is doable now……do more of that stuff to drown out the crap we all deal with around Endo. Obviously in moderation.

I’ve just had a fresh decaff coffee and I have the fluffiest ever dressing gown coz I wear it a lot, I treated myself to a really expensive to me one from Sainsbury’s ’. The Anethatist commented on how lovely it was….so I felt my efforts were noticed 😉

I like nice 🫧 bubble bath 🛀 and shower gels, not expensive but what I can do. As I am on benefits coz of Endo and can’t work as too poorly. And I might have Chrons aswell 😳😞🫣 but one step at a time. Waiting on biopsy results and staying occupied incase I worry it’s cancer 🙄

Thinking about what I can do helps me take control and stay positive. I have also recently bout a walking stick and am doubly incontinent at times - that has really been a mental battle. I wear the nappies and I have really nice air freshener 😆 And my post Gynecology op I will have an ambulance collect me and use a wheelchair for the first time.

Yeah…..the poker stabby pains are not something I have had a lot. So, I hope you feel seen and heard lovely ☺️ You aren’t alone, we have each other and we are awesome even on the worst days ☀️🌈💕❤️‍🩹🍫🥲🤣😂☺️🤪

[valgal76 in reply to 635703]

That cheered me to bits thanks 635703. I am on benefits too. I loved watching Netflix all day long, til i forgot my password!. I have started walking, and i no longer have incontinence problems, so that is one thing less to think about. Should i wear a pad, shouldn't i. Don't think about it anymore. Thanks for your lovely op and my fingers are crossed for you on your biopsy results. I really ought to get a pap smear done, but i'm too chicken to have it done, its painful for me and i just cannot cope with the pain, All the best, Val

[635703 in reply to valgal76]

glad you can now not worry about incontinence - so many good wishes to you in your health. I think when you get really bad, it’s hard to navigate mentally. But The Medical Psychologist helped me loads to cope!

My friend came to measur my windows as I need to make some blackout curtains as I have a new build home and last year it was like an oven And I can’t deal with that this year! Got a second hand sewing machine. So going to save up my spoons of energy and make something with her guidance ☀️🌈💕😎☀️Take care 🫂

[Panwendy]

you need to ask your doctor for pregabalin, naproxen, morphine, buscapan I'm on all of these to help with my pain m. It would help so much more than over the counter pain relief. I’m hoping to come of some if not all of these after I’ve had my operation. I really feel for you and all the other women on here. I’ve also started taking fish oil supplements, multi vitamins and collagen. I had heard these can all help with the inflammation and obviously they and keep your diet as good as possible. Hope this helps a little 😊 and good luck 🤞🏼

[Endo_Jaded]

Endometriosis has been the bane of my life - it took everything from me and my insides were as described by my top surgeon “The worst he ever seen”. I had endometriosis, fibroids, adhesions, cysts, adenymosis, frozen pelvis and tortuous colon with endo. My only option was a total hysterectomy, oopherectomy and excision, I was requiring a bowel resection but thankfully my surgeon was able to go down close to remove it. Sadly, this causes septicaemia and was a whole other issue and took 6 weeks alone to cure.

I’m now on HRT and definitely improved, but not 100%.

For severe pain and to protect you kidneys and liver I highly recommend you request and or demand buprenorphine patches from you GP.

These have saved my life and kept the pain almost at bay. I was using 20mg at my worst pain and on occasion topping this up with co-codamol. I’m now on 10mg with occasional co-codamol, but I have fibromyalgia too.

Treating your pain is critical to keep you sane, but you still need the endo removed. Even though it’s not a cure or solution it definitely helps give us some life back.

I hope you consider this relief, the contraceptive pill extra in my opinion makes it worse especially by masking what it’s actually doing to us.

Hugs xx

[Washington1]

Hi. Sorry to hear you're in pain. I understand that feeling of isolation whilst also being menopausal. My question is, does the co-codamol do anything at all? I used to take co-codamol, but felt they did nothing. I eventually found that a certain percentage of the population do not have the enzyme to break down co-codamol into a pain relieving drug. It just goes through the system and does nothing to help. It made sense to me as I used to say to docs that I might as well be taking smarties... Pain relief that helped me... a tens machine. Wish I'd purchased one of those a lot earlier than I did. Does the pain last for some time or is it more a stabbing pain that comes and goes? If it's a stabbing pain that comes and goes, then have a look up appendicitis and speak to your doc. For chronic pain, then I found Voltarol suppositories to be very good, but I eventually had breathing side effects that meant I had to stop taking them. Then I used oral dispersible Tramadol. They gave me oral dispersible as this helped minimise all the throwing up. There are other options out there as you can see from your responses here. Worth chatting to your doctor some more and trying to get the help you need. Lastly, I find that eating healthily can really help. I tend to make sure I have at least 5 fruit/veg a day. Eating healthily really helps your bowels too, which for me has a knock on effect to endo pain. And drink plenty of water. Some of this probably sounds obvious, so sorry if that's true for you, but sometimes I forget to drink enough water and that has all sorts of side effects for me. I hope you get the help you need and that you feel better soon xx

[Escapologygirl]

The 'red hot sudden pain that shoots right up through me like someone in the middle ages torturing me pain' is something I get too and it's just so random and out of the blue that I literally have to stop whatever I'm doing and breathe through it like labour breathing. First time it happened I was 19 and walking to college, recently it happened in town and I was so embarrassed, I'm 45 now. I've also had to stop working as I'm in pain so much, my endometriosis when diagnosed in 2018 had already spread to bladder and rectum and covid didn't help so now it's probably worse again, I get constant pain in my sciatic nerve lower back and hips and trying to pee or pooing is a daily struggle, sometimes even farting can really hurt my abdomen. I'm on mefenemic acid or ponstan for my pain management. I'm in Ireland and noone will look at me for surgery. I'm finally getting an MRI in June to see how bad it is, I've also stuck with the Mediterranean diet and cut out added sugars and it helps, like the others have said, I often just change into comfy dressing gown when I'm really sore and just stay in my abdominal heat pad and rest. I wish I could hug you but just know you are not alone and not going mad, this is a horrible disease and you are doing great

[valgal76 in reply to Escapologygirl]

All i had was a hysteroscopy and laproscopy which then identified the endo, and then all i got told at the end of it was keep taking your painkillers!!!, nothing else was offered. I am watching the coraonation of the king and all of a sudden this intense ripping up my groin started. I am taking my morning co-codamol but it can start anytime and that's what gets me down sometimes. I do feel better once the painkiller start in. The gynecologist i saw showed me the pics of the endo and they looked like little black dots. How can something so small, cause so much pain, i just can't figure it out!!!! Thank you all for answering my comment, i feel not so alone

[Escapologygirl in reply to valgal76]

I know what you mean, it's the random timing it can attack is the hardest thing to work around I am so sorry with how you were treated but if its any consolation I didn't fare much better. Hugs

[Prilo]

cocodamol has been known to worsen the symptoms of endometriosis so the more you take it the worse your symptoms.. I have felt better since I stopped taking it after it worsen my symptoms when I took it for period pain

[AlexaMac]

Hi, l have just had surgery for the symptoms you describe and also post menopause bleeding, l am 77, so yes endo can be with you at any stage after puberty.

I also had the pain you describe especially a month or so after my first surgery which was removal of ovarian cyst, both ovaries and both fallopian tubes, after having an MRI after the first surgery they found it was necessary to complete the hysterectomy 6 weeks ago, due to a carcenoma which had infiltrated the endo in the lower part of my womb. I am not suggesting you may have cancer.

What worked best for me was putting on my shoes and having a short walk say 20 minutes or so it seemed to take off the sharpness of the pain.

I hope you soon have the answers you are needing. If you want to chat again l am here 2 or 3 times a week.

Alexa 🌸🌸🌸

[valgal76 in reply to AlexaMac]

Hi Alexa, i've started walking this past two weeks. But the endo likes to hit me at anytime of day, but i do enjoy getting out into my village twice a day if i feel up to it. So keep up with your walking. I like getting out into the open air and listen to the birds tweet, its very cathartic for some reason