To feel like this pain isn’t ok

[Pigsinblankets1]

I have endometriosis I’ve had two surgeries take numerous meds vitamins have changed my diet seen private doctors I’ve brought numerous creams heat packs cbd oil you name it I’ve done and tried it. Ive been told a hysterectomy won’t be a 99% cure and as I’m so young and trying for a baby it not something I will do just yet. I’m yet again in bed crying from the pain can’t sleep I’ve taken morphine, cocodamol, naproxen, trans anemic acid and I’m still in so much pain. I ended up in a and e last month twice because of it. I currently have no life I quite my job and was so exhausted today I woke up at 10 and then had to go back to bed for a nap this afternoon. Doctors can’t help me anymore as I’ve tried all the treatment available. I’ve been given pills to make me less emotional and down but I still just feel like my life is not what it should be at my age the constant pain every month is excruciating I spend two weeks rolling in bed screaming/crying in pain.currently awake in bed in pain can’t take any more pain medication. My options are stay in bed in pain and try to get some more sleep or a trip to a and e with a 6 hour wait.

I'm sorry, this does sound like too much pain. I have no advice but wanted to bump it for you.

No advice but can you be referred to a pain management clinic?

You poor thing. I'm so sorry but I don't have experience with this to offer any practical support but wanted to let you know that I'm here for a hand hold.

It sounds like you've taken as much as you can in terms of pain relief this evening / morning, so doubt a&e will be able to give you any more at the moment. As you say, there's the inevitable wait, your bed may be more comfortable. You sound exhausted and truly at the end of your tether.

I'm presuming you're a member of a support group and/or have had your full hormone levels checked?

Thank you us I’ve had a full hormone check just fruias say my age I should be living life to the max but I’m not sadly

I've had three surgeries to treat my endometriosis and while they helped, they didn't cure it.

It's horrendous, no one can understand the pain unless they've experienced it. There are some great support groups on Facebook, definitely join if you haven't already.

I know you're TTC but the only thing that keeps me sane is going on the pill continuously for a few months so I have a total break from having a period. Dealing with the pain every month is too much!

Best of luck, and know you're not alone.

I can absolutely relate to this and I am so sorry you are dealing with it too. My endometriosis has had such an impact on my body I have also developed fibromyalgia and chronic fatigue syndrome, it is hell! I’m in unmanageable pain every single day. I still manage to work part time but I ‘waste’ all my ‘good’ time at work and end up ill the rest of the week. I’m afraid I can’t be very helpful except to say that my mood can fluctuate and some days it doesn’t feel as hopeless as others. It is horrific that we are still dealing with this level of pain in 2023 and that doctors can be so dismissive! Sending solidarity and positive thoughts to you, it’s bloody grim!

Thank you all for the support I also have cfs and suspected fibromyalgia

What was done during your surgeries? If it was ablation, the endo doesn't get removed, just the 'top' taken off so to speak so can regenerate. You need to have excision surgery with a skilled endo specialist (not a standard gynae one). There are a handful of really good ones in the country.

I had excision surgery twice

If you are taking that amount of analgesia and are still in pain you need to be referred to the pain team. Also are you awaiting a gynae outpatient appointment? How old are you and how serious about conceiving now are you? Unfortunately the best way to give you some relief will shut your cycle off but may be worth trying for a year or so to give you a break (depending on age of course).

Can you post who it was you had surgery with? Sometimes post operative pelvic physio is required, as scar tissue can build up etc. Sometimes nerves are involved which requires a different approach. Agree with the poster above, pain team is a good start, but I would recommend further investigations. Shaheen Khazali is an expert in the field along with others around the UK, but the real specialists are few and far between unfortunately.

For the endometriosis - do look into the various contraceptive pills available. They can ease the symptoms. Also, I found this company to be very good: wild nutrition. They do a range of vitamins for women including specialist for endometriosis and you can have an online consultation. www.wildnutrition.com/collections/endometriosis-supplements

It maybe that your pain relief pills are working against each other - do run that through with a doctor to make sure one of them isn't creating other problems or aggravating your symptoms.

I hope you find a solution.

@Heidi1976 i saw Shaheen Khazali in August at the Runnymede he told me there wasn’t anything he could do and once I’m done having children to come back. I’ve seen a pain team before but that was a many years ago on the waiting list to see the pain team again. I also regularly had pelvic therapy for a year last year. @Pr1mr0se I can’t take many contraceptive pills due to migraines and risk of stroke. The other pills all make me sick but once I’ve had a baby I’m willing to go back as id rather feel sick than how I feel now.

@Pigsinblankets1 Sorry to hear you have fm and cfs too, it’s life changing. I really wish I could be more helpful.

Things saving my sanity at the moment are: pain meds, multiple hot water bottles, body pillow, Epsom salt bath, massage gun, tens machine and tea! The last time I went in to the doctor to talk about the pain I was given more antidepressants! If I could
just get rid of the pain I wouldn’t be depressed!

Feel free to PM me if you ever need a rant, sometimes it’s just nice to know you aren’t dealing with it on your own.

Back in bed with pain killers and a hot water bottle can’t move from the pain feeling very useless

hugs OP - sounds awful

I don't have experience of this, but I was in huge pain in my early 20s with osteoarthritis (and other complications making surgery very difficult).

I definitely found online support groups to be a very big help for tips, and space to vent and receive understanding.

Can you get referred for pain management?

I’m waiting to be referred through the endo clinic been over a year of waiting