Tips for pain relief with endo - let down by consultant and having to go it alone.

[Emma511983]

I have been suffering for months with my endo and had an urgent 2 week referral to investigate a complex cyst as a result of having an ultrasound due to the awful pelvic pain I was experiencing (the pain is similar to the pain I had 16months ago where they removed 2 large cysts and a fallopian tube). I had my CA 125 bloods done a few weeks ago, along with an MRI scan. The consultant who saw me (and lacked any sort of empathy) has stated (via a letter) that the cyst is to do with my endo and has discharged me from the hospital. I have not even had a follow up appointment to discuss all the cysts that are growing on both my ovaries that are related to my endo nor any pain management options. He also made the point of telling me that my cysts that range from 2cm to 4cm are very small and they would not consider removing them, instead pain management. I am in terrible pain on a daily basis. It is not only impacting me physically, but my mental well being is at an all time low. I am now going to have to battle to get a GP appointment and will have issues in deciding what is the best pain management for me.

I am currently taking tramadol and naproxen with little benefits. I have also started to pay for acupuncture to try and help with the pain as I have read that this can be good, however the financial costing makes this treatment unsustainable. I was wondering if anyone could recommend another pain relief tablet I should suggest trying when I eventually get to see a GP.

I am spending each weekend pretty much in bed due to the pain as I force myself to do so much in the week at work.

I will be putting a complaint in with PALs as I feel the way I have been treated is shocking, esp with a letter to discharge me. I feel that the way women are treated with this condition just highlights the gender pain gap.

Any advise will be greatly appreciated.

Thanks,

Emma.

[Missy100]

Hi Emma,

It is so wretched being stuck in a cycle of no real help. I take Tramadol too but also take Mefenamic Acid rather than Naproxen. It is also an anti-inflammatory but in addition to this can help ease periods. (It didn't help my bleeding issues though and I later was put on Tranexamic Acid as well). The long term use of an anti-inflammatory played havoc on my gut so I also take Omeprazole which has made a big difference in that respect.

Mefenamic Acid is a stronger anti-inflammatory than Naproxen so may be enough to make a difference for you. I had already been changed to it before being prescribed Tramadol so don't have first hand experience approaching the situation from that angle.

The combination of my meds helps but I do rely heavily on my microwave heat bags as well, especially when my pain is at its worst.

If the tramadol is altogether having no affect on you (not sure if it is not affecting you or is just not helping enough) and you have discussed increased dosages with your doctor with no improvement it may be a case of how your body reacts to that specific drug. I know from past experience that Demerol does not affect me and was told this is the case with some people where some drugs just don't react the same in their body as they do for most. I, personally, haven't heard of anyone being prescribed a different opioid that tramadol in relation to Endo but that doesn't mean it doesn't happen.

There is, of course, the issue of our bodies building up a tolerance to opioid pain relief to the point that the dosage is increased to max and then stops working. I try not to take my tramadol if I can manage without it and save my highest (max) dosage for the very worst days.

If you are in a position where heat helps but heat bags are not practical due to work/ect, there are some decent stick on heat pads available in store that I have relied on for situations where I absolutely couldn't use my heat bags. I went down the route of a tens machine in the past as well and only ceased using it when it stopped being effective. But considering the cost it is not that expensive for even a bit of short term pain subsidence. I found the replacement pads were much cheaper in bulk on line.

I'm sorry to say I don't have much other suggestions other than trying acupuncture and maybe reiki. I've heard of cases where others have found some relief from them. I haven't checked where you are but if in the UK my husband went to acupuncture through the NHS (for pain management) so you may want to bring that possibility up when you do manage to get into your GP.

I wish you luck and the hope that when you feel beside yourself with it all that you never feel that you are alone in it. There are those of us out here who understand your pain, sorrow, frustration and anger from a first hand perspective and we care.

[Emma511983 in reply to Missy100]

Thanks for your reply. I can no longer take the trans acid as my IVF consultant has said to stop taking that. The endo has totally had an impact on my fertility.

Heat packs are good, but they don't work as well as a hot water bottle. However, being a secondary school teacher makes it hard to have a hot water bottle as I need to circulate the classroom etc...

I have contacted PALs today as I do feel I am not receiving the treatment I should according to the NICE guidelines.

I hate taking tramadol due to the way it makes me feel and as I said before it doesn't really help with the pain.

[Missy100 in reply to Emma511983]

I hope that you get some headway with PALS and it leads to you finding something that helps you manage your pain more effectively.

[Purplewitch18]

Hi hunny, im so sorry youre going through this. I had s lap but nothing else has ever been done. Ive literally just been to see an endo specialist, it cost me £150 to see him but it was worth it. Once you get their feedback it goes to your gp then for what they recommend. Best of luck xx

[Emma511983 in reply to Purplewitch18]

I may have to do that, however it makes me so cross that I am even considering that. We are entitled to a certain level of care and just being let down.

Thanks x

[Purplewitch18 in reply to Emma511983]

I totally agree, but having been where you are now id totally do it. It saves a lot of time and stress. Plus on the nhs you usually just get to see a gynae, and they wont have anywhere near as much info or treatment options for endo. Sad but true, things are changing but very slowley xx

[Purplewitch18]

Just read you are having ivf, i had my consult with the endo specialist at my ivf clinic. I wanted to know how to manage pain whilst having ivf and was worried about how all the drugs would affect me. Maybe you have someone like that at your clinic you could pay to see? I wish id done it years ago x

[Emma511983 in reply to Purplewitch18]

That's a good idea. Because the consultant stopped treatment I am now waiting to hear from her about the treatment. x

[Sophtoots]

Hi there,

Sorry to hear you're struggling so much and that you're not receiving the correct treatment. I totally agree with you on the gender pain gap, and I hope that PALs can offer you some support.

The only thing that completely kills the pain for me is codeine, but it makes me sleepy and can be addictive, so it isn't a great long term solution. I have had some success with alternative therapies like essential oils and castor oil packs, and I'm considering trying CBD too as I've heard some positive things (you can find loads of info about this online).

When you're teaching, could you use a mini TENS machine? Less conspicuous than a hot water bottle! Also, as you have cysts, have you looked into N-Acetylcysteine? There have been a few studies about it ncbi.nlm.nih.gov/pmc/articl....

[Sophtoots in reply to Sophtoots]

I just noticed someone else mentioned the TENS machine. Might be worth a shot!

[Emma511983]

Thanks for the tips. I do use caster oils packs, my acupuncture therapist suggested I use them. I am looking at a TENs machine but not sure which one to get. PALs have said that the managing director is looking into my case and I should hear back by 11th December. I mean it just gets worse.

x

[Hencharl99]

Hi Emma

After a recent visit to A&E with crippling pelvic pain a lovely female doctor prescribed voltarol suppositories. I slept for the first time in weeks & had 4 pain free days. Then the pain came back but it’s worth a try.

I’m now on a combination of Tramadol, codeine, paracetamol & ibuprofen & I’m having less flare ups in the last few days.

I’ve also tried an holistic therapist - the Bowen technique. (A gentle rolling action over soft tissue which creates signals to brain & rebalances the body) I felt really relaxed & pain free during the treatment but apparently it takes 3 sessions to work properly.

I also use heat pads & long hot soaks in the bath to ease the pain.

Good luck. It really is the most awful pain & I totally feel for you. X

[Emma511983]

Thank you for your advice. x