Pain management for endometriosis

[Usernaame]

Hi, does anyone have any suggestions for pain relief?

I'm in the process of trying to get a diagnosis for suspected endometriosis

A few days ago I was prescribed IBS meds and Naproxen but so far it doesn't feel like it's making much of a difference

I'm not sure if I should I keep trying with them or go back to my GP and ask for something else

What treatments/pain management has worked for you?

Also, what kind of pain do you experience and how does it affect you?

The doctors make me feel like im being dramatic but ive spent the best part of the last 6 weeks in bed sleeping or on the toilet crying and I feel like im going round in circles. I've been going to the doctor with the same problems for about 2-3 years now and im absolutely no further forward and the pain is getting progressively worse

Any advice is welcome thanks

[Mindfullness4791]

I'm sorry to hear you are going through so much pain. I have a provisional diagnosis of Adenomyosis.I have tried every pain relief going. The only one that really worked is Dihidrocodeine, when it's really bad. I try and stick to Paracetamol, and i find the dispersible better. I use Naproxen when the nerve pain down my legs is unbearable. I swear by my plug-in heat pad, directly on the area of pain, that works better than any pain relief. Epsom bath salts in the bath gave me some relief, too.

My symptoms are bloating and extreme pelvic pain. I also get pain down my legs. I also have bowel/bladder issues.

I hope you find some relief soon 🙏X

[Usernaame in reply to Mindfullness4791]

Thank you for taking the time to reply ❤️ I have a heat pad too, which I tend to use more than anything else & I can relate to those symptoms. Thank you x

[AllthatGlitters]

I have adenomyosis and endometrial so I have lots of labour like pains, flooding through clothing and bowel problems to name a few. I’m on naproxen, if that doesn’t work I then take tramadol. I also use a tens machine and a hot water bottle when on my medication.

I see you have been going to the doc for 2-3 years, I think if I were in your position I would change my GP to hopefully get one that takes you seriously or pay for a private consultation with a gynaecologist (mine was £200, you can then go on the NHS waiting list for any procedures you may need) x

[Usernaame in reply to AllthatGlitters]

The last GP I spoke to seemed to take me a bit more seriously so I'm staying hopeful but I am considering getting a private consultation, I will look into it! Thanks x

[TennisCourt]

Hey there! Sooooo sorry you are feeling like this. I have been in the exact same boat and only just a little ahead.

First of all, you are NOT dramatic. I’ve felt like that, is it in my head, am I just weak but NO. We are in real pain, don’t let them gaslight you.

My symptoms are: heavy and extremely painful periods, abdominal pain every day, pelvic pain, extreme IBS symptoms (diarrhoea & constipation), severe bloating, extremely bad pain deep in bum (Stabby / lightening bum but also consistent dull pain), fatigue, leg pain(heavy dead legs), pain in stomach with a full bladder.

I always think it’s interesting to know others symptoms on here especially after no GPS or doctors are ever helpful.

I also haven’t been fully diagnosed yet, I paid to have a private consultation with a specialist in August, she said instantly said yep Endo and I need surgery which I’m having at the end of October! I’m so excited to finally found out what’s wrong with me, I am intrigued at where the Endo is. I reckon bowel, rectum, pouch of Douglas, possibly bladder.

In terms of pain management, codiene, hot water bottles, heat pads. On my periods I have to have a hot water bottle glued to me practically burning my skin off🤦🏽‍♀️ I have electric hot water bottles and electric heat pads from Amazon and they are sooooooo good and easier.

I also try my best to just rest, I’m a very much get up and goer so I force my self to have down time as I know my body needs it.

If I was you I would find a local specialist, make sure they are certified on BSGE website and pay to have an appointment. Mine was £170 and a life changer, the first medical professional to listen to me, be supportive and not gaslight me. Just so you then know what your next steps is! For me she said I needed the lap but nhs list is 18 months so I’ve gone private xxx

[Usernaame in reply to TennisCourt]

This comment is so validating and relatable, thanks so much for taking the time to reply, it sounds like we're in a similar situation, it's comforting to know I'm not alone. Those symptoms are almost exactly the same as mine, this last flare has been the worst so far, I've been absolutely floored with it, a lot a lot of fatigue! Is this something you struggle with too?

Im so happy you're getting surgery, i hope it helps you feel better, do you know how much the surgery is if you go private?

I think mine is possibly located in bowels, bladder and I've been having some trouble with my belly button too so wondering if it could be that.

I'm also a get-up-and-go kind of person and being laid up in bed for weeks without anyone popping in to check on me has been tough! Feeling more positive today thanks to everyone in these comments xxxx

[TennisCourt in reply to Usernaame]

Bless you!!! Yes absolutely the fatigue gets me. I’m falling to sleep on sofa by 8pm, by time I’ve finished work at 5pm I’m just done in! Really struggling with that especially as I get frustrated as I want to get things done.

My surgery is going to be almost £7000, it’s a lot of money and it took me a while to make the decision but I can’t wait 18 months. I’ve wasted almost 3 years of my 20s like this im not waiting another 2!!!

So glad you feel validated, I felt the same when I joined this group. If you look at my profile you can see my first post where I wasn’t sure if it was Endo and everyone was amazing!!xxx

[Kirsty360]

Sounds like you're having a really tough time at the minute Usernaame... I have stage 4 endo which I am managing as best as I can at the minute. A few of my treatments have been mentioned above... Dispersable paracetamol as it gets into your system quicker, I use Dihydrocodeine, tranexamic acid/mefenamic acid have been a god send the week of my period, again along with heat and tens machine. Recently started doing pilates and mindfulness which I find helpful... With your last GP kind of onboard, ask for a referral to a pain management clinic (mighty waiting lists too) they have a lot more prescribing power than your GP... Keep advocating for yourself, of something is off, we know our own bodies... Hope you are able to get some relief from the daily battle and get a treatment plan in place 🙏🏻✨

[Usernaame in reply to Kirsty360]

Thank you ❤️ mindfulness has really helped me get through the last few days, i usually do 10-20 mins of yoga every day but I've been struggling with that lately

I feel a bit better prepared for my next appointment now, but you're right, we know our bodies and we know when something isnt right

I hope you find relief and healing too, thanks again x

[1Poppy1234]

I had similar problems getting pain meds. They say the mirena coil helps I'm on my fifth now so I'm not sure if it does or not as I haven't been without one for years. I have Oramorph for when the pain is really bad and it does help but you have to be wary as it causes constipation. 🙈When you see Gynae staff/Dr they are more sympathetic as they understand the level of pain.

[Usernaame in reply to 1Poppy1234]

Yes they've mentioned switching up my contraception, ive been on the implant for about 10 years or so, now I'm a bit worried about how my body will react when I start messing with my hormones again 😖😅 thanks for replying x

[Kieraface]

hey I’m so sorry you’re experiencing so much pain. I can definitely relate. My doctor prescribed diclofenic which I take alongside omeprazole to protect the stomach and paracetamol - I also have codeine which I take when pain is really severe but try to limit that as I have a kink in my bowel from the endo so codeine can sometimes make constipation pain an issue so yeah…. Joys 🙈😥

The diclofenic does work quite well. I wish you the best of luck trying to find something that helps.

Also - hot water bottle is my best friend x

[Lovedsibling]

hi

You are not alone in this as I’m writing this with rice bags wrapped around my lower abdomen.

I have been off my mini pill n now the pain has kicked it real bad n it’s every day b it’s constant.

I have been to my gynae but she didn’t cater much. Gave me diclofenac for five days despite telling her that I have already been taking it for last 15 days

Diclofenac helps so does rice bags

More pain it’s better to take tramadol

Haven’t tried tens machine

Kindly recommend good options