Pain relief advice for endometriosis

[Escapologygirl]

Hey lovelies

I was prescribed amitryptaline for my pain relief and I'm not finding it much help. I noticed yesterday that my legs are swollen and my socks had left a pinched mark/line ,I took photos to show gp. Going no2 really hurts more and I'm not even on my period , I'm feeling huge and I've not changed my eating habits. At this stage I don't trust any meds to relieve pain . Since Christmas everyday I have hot sharp shooting pain in my lower back and left hip leg, walking sitting standing lying down nothing helps. I also have the daily lovely usual sharp shooting pain in abdomen . Has amitryptaline helped anyone?

[KittyTherapy]

Hi, I hope this os of some help tho I've perhaps not directly answered your question...I take a varied dose of amitriptyline (between 30 +40 mg each night) for Vulvodynia which I think is associated with my endometriosis and I find this to help hugely with the vulval pain. Though I wouldn't say this helps the other pains I get with endo. I have just had surgery for advanced endometriosis (lots of adhesions also involving the bowel and a large endometrioma) and am 1 week into the healing process. I am hopeful this will help long term with pain management. The mirena coil was also fitted at the same time so cannot comment yet on its effectiveness in terms of pain control but that's the hope.

Pre surgery I was just taking mefenamic acid during my periods when pain would be at its worse.

Post surgery i was taking oramorph in the hospital and have been on co-codamol post discharge but only for short term use and they both helped the pain. I'm not sure if opiods can be prescribed long term for endometriosis management.

[Escapologygirl in reply to KittyTherapy]

Hi Thank you so much for your reply and wow you've been through a lot. I hope you're ok and recovering well.

Thats a high dose, I was on 10mg and not happy that I was extremely bloated all the time which with endometriosis is bad enough.

Mefenemic acid 500mg 3times daily is what I was on the last 2yrs and I found that helped.

[Endofitall]

I’m sorry to hear about your pain. Amitriptyline usually needs to be somewhere between 20-50mg to help pain. I was on 30mg for some years which did make the sciatic nerve type pain (shooting nerve pain down my leg and painful pins and needles in feet etc) more bearable. I had to go up very slowly over weeks/months though and take it with my tea in the evening rather than before bed so wasn’t groggy in the morning.

It definitely worked better than anything else but takes some time and tweaking.

Also remember everyone’s chemistry and pain is different so different things work for different people.

Amitriptyline was an important part of treatment for me and I found a way to eventually tolerate a decent dose. My main side effect was night terrors so I couldn’t go higher than 40mg.

I’ve just recently had surgery and after decades of this pain it’s an incredible relief to be free of it. I had endo affecting rectum and left uterosacral ligament which caused this sciatic nerve type pain.

[Escapologygirl in reply to Endofitall]

Thank you so much for your reply and wow you've really been through the ringer. The night terrors I never associated to the amitryptaline I was having the weirdest nightmares and was freaking myself out and was nearly avoiding tv at night. Never twigged.

I'm on a very long waiting list to be seen by an endometriosis specialist years long sadly and I'm 46 now, could be almost 50 before I could be seen and this is private healthcare in Ireland today.

Sounds like you were on a high enough dose too but like you said and I've learned that this is not a disease with a one fits all solution.

[Hidden]

I am taking nortriptyline, which is similar but less constipating (apparently :/)

These aren't like taking ibuprofen or opiates - you need to take it daily and long term to have the benefit and it takes a couple of weeks to kick in and quieten the pelvic nerves. I also had to increase the dose a couple of times before I really felt the benefit of it. I have found that taking it enables me to manage the pain when it does flare up with a more reasonable combination of other painkillers (so ibuprofen and OTC co-codamol) than I would need otherwise. You might also need a laxative like fybogel or movicol alongside as it slows down the bowel and constipation is a common side effect (I am having to take both and managing my bowel habit sometimes feels like a full time job)

[Escapologygirl in reply to Hidden]

Thanks for your reply and wow that's a lot to be taking on a daily basis. I was taking it daily and was noticed that the side effects seemed to kick in quicker than the relief aspect. Its crazy isn't it how what works for someone else is not great for others. Hope you're OK

[KittyTherapy]

Oh yeah forgot to mention about the constipation like others have mentioned. Definitely something to bear in mind and look into laxatives to help manage. I've been on amitriptyline since 2015 and thankfully don't get many side effects. It's hard to think back to when I first started taking it so tricky to recall if I had more side effects initially. Main thing for me is the impact on bowels and the drowsiness but I take it at night and don't feel too groggy in the morning. Can still function/drive. I definitely would not be without it, nothing else helped the vulvodynia like it. But agree with others in that every person is different. Hope you can find something that helps x

[BloomingMarvellous]

I didn’t find it helpful but found Nortriptyline worked for me at very low dose. Either way though it sounds as if your symptoms and pain maybe from congestion or another reason. Don’t put up with it.

[Escapologygirl in reply to BloomingMarvellous]

Thank you for your reply and yeah definitely think I need to see my gp again, there are so many and difficult ways they all work, thank you. Hope you're well

[JOSANDY40]

I took amitryptaline. It didn't do anything for me! Unfortunately the pain in your left side, back and legs is linked to inflammation in pelvis and the sacral Nerve complex to the spin. Yoga and small back back stretches have helped but if it's bad don't do anything just take anti inflammatories. Went in a warm bath. Hot water bottle on your lower back. TENS Machine might help. I've had yrs of this.

[Escapologygirl in reply to JOSANDY40]

Thank you for replying and I think you've just described me and my life perfectly. Warm baths with Epsom salts on a regular basis and a very gentle yoga class on a once a week basis. I have a wraparound abdominal heatpad and I love that, its just the times the pain gets really intense I need something to help relieve it. I've only had one mri since diagnosis and ultrasounds show nothing even though I know I'm in pain.

[JOSANDY40 in reply to Escapologygirl]

Weridy at night if I'm in pain and I drink Fennel Tea which is calming and antispasmodic it helps. Doesn't taste that good but I put honey and lemon in it which helps. Also Belladonna which is available online helps if the painkiller doesn't work which they sometimes don't!

[Escapologygirl in reply to JOSANDY40]

Yes I love fennel tea but I thought it was not ok for endometriosis and Thyroid? I am a big advocate of natural supplements and thank you so much for the Belladonna advice, definitely going to look into this. I find with the ponstan/mefenemic acid and the amitryptaline I was having the pain in the hip throbbing away after taking the 500mg 3times daily lying down in bed so I wasn't getting 100% pain relief.

[JOSANDY40 in reply to Escapologygirl]

Did you try TEN Machine on low very power setting almost so you can't feel the pulse for back pain setting. Takes a bout 10mins to start working. Place electrodes on sides of body at middle of hips

[Escapologygirl in reply to JOSANDY40]

I've not tried it but I have heard about it. Not been able to work since Feb 2022 so it's not been on my radar

[JOSANDY40 in reply to Escapologygirl]

I had leave work and go on benefits which I'm not happy about but I can't hack it. It certainly has effected girl power and my personally.

x

[Escapologygirl in reply to JOSANDY40]

I was on illness benefit but that only lasts 2yrs have now been cut off and am waiting to hear if I qualify for Invalidity Pension as endometriosis is a chronic disease and I can't work. Definitely kills girl power xxx

[JOSANDY40 in reply to Escapologygirl]

I got myself a Advocate to attend a DWP Hearing. To get through their hoops on answers when I did it you have to score 15+ points. When I was sent a copy of the Form I sent in which I had precopied I noticed someone had altered my answers therefore failing the scores! I phoned the DWP and said I was going on the BBC with your fraud to a document I had signed. So I went to Teddington Disability Office and showed them the 2 Forms. They said they knew of other this had happened too. So I went for a reassement to get a mandatory decision with copies of their fraud for a Hearing but my application was excepted and no Hearing happened which I wanted some to be accountability for the misery. Get yourself a Advocate. They are free but they are a witness. The Advocate visited me before to understand my health issues and disabilities to live. Issues with days that I felt to unwell to cook or get put of bed due to pain or lack of sleep. Difficulties in walking distance or some days unable to step just a few steps without extreme pain or able to feel my legs as nerves weren't messaging correctly. Generally problems with chores. Generally being unable, or unreliable from hrs or days. Changing or cancelling appointments. Even down to not being able to visit family for a occasions. Very difficult trying to smile when you feel low. People not inviting you cos your cancel or that you want to talk but all you have to sat it negative. You generally look reasonable or good so you come across as a cry baby. Even family don't understand.Myself I don't talk about it too much anymore. I even talk to myself about its not me it's the woman next to me with the pain. Trying to get the brain, tell it its a lovely day, or I remember that holiday so I imagine walking on that beach. That in the moment you take back the control of the brain and guess what the pain is less. Its hard to achieve but over the yrs I have trained my brain to a point. I can only do this in bed and to be the body in pain. I can also imagine I can float my body above the bed and lowering my breathing rate. These are all coping exercises, similar to Yoga or Tai chi mental and physical.

[Escapologygirl in reply to JOSANDY40]

Oh wow as if having endometriosis to deal with on a daily basis now the dwp are sabotaging too! If they're that bad in 🇬🇧 they're even worse in Ireland

[white61]

amitriptyline hasn’t really helped me, just helped me sleep a bit better. I’ve stayed on it as they keep suggesting it but I think it does nothing really

[Escapologygirl in reply to white61]

thank you so much for replying - yeah i found the same as you but i am not settling for this - we deserve better - hope you are ok xxx