Pain management

[Sammy455]

Hi all I'm suffering with a flare up at the moment I'm awaiting a hysterectomy and have prostap injections but as I can only have them for 6months and a 6months break.I find that when I don't have them the flare ups are every few weeks sometimes lasting 13 days .It really effects my life the pain is so bad and I feel like the Dr's don't help. I've taken oral morphine and diclofenic ibruphen, I'm a grown woman and often roll round the floor crying with the pain .I use hot water bottles do the rocking exercises , and I'm not classed as priory so my surgery still hasn't been scheduled. I've considered going to A&E but I don't think I could face waiting hours to be seen why suffering the pain and rolling round.I feel so alone I gave to take time off work and spend days in bed.Has anyone got suggestions how else to try and manage these flare ups.Thanks

[UpandUp]

have you tried a tens machine before? They help me a lot!

[Sammy455 in reply to UpandUp]

Yes lovely I think I must of tried everything , I have never known pain like this!🥲

[JOSANDY40 in reply to Sammy455]

A Hysto is the last stop but new information says for most Endometriosis suffers it doesn't stop the pain longterm as mostly the Endo is stage 4 and on the bowel. There is evidence that a tiny gland in the brain makes, takes over the Estrogen and for most who try to take addback it's not working. I hope you have all the information in front of you about a Hysto, its effects and life span.

I wish you well.

My best x

[ValerieVal]

I'm sorry to hear you're in so much pain, this sounds debilitating. I wonder which NHS trust your care is under? I was waiting 2 years for a hysterectomy, I was put on Prostap and then Zoladex; I had issues with both but there was never any mention of this treatment only being for 6 months, as alongside HRT you can have these for up to 2 years. If Prostap helps, I would recommend speaking to your gynaecology nurses about this.

I know it is so, so exhausting but keeping letting your GP and gynecology team know how desperately in pain you are is also important. They should be giving you some idea of when your surgery should be. When I did this, I was also prescribed Naproxen painkiller and referred to pain management clinic (this was through Manchester Foundation Trust).

Sending you love, what you're dealing with is awful. Xx

[ValerieVal]

google.com/url?sa=t&source=...

Link to MFT trust guidelines for GnRH injections, it might help having this, if you have a discussion with your care team about what is possible

[Username12345678]

I completely agree with ValerieVal i was on Prostap continually for 2 years. If it’s working for you I’d suggest asking for the injections back to back until your have your hysterectomy. Small things that also have helped me over the years are lemon & ginger tea (I drink it all day with slices of lemon in to make it tastier) and gentle yoga positions when you are able. Dr Brianne Grogan has some fantastic free videos on her you tube channel - youtu.be/L2rDh5b4EI8?si=MOd...(Not working as expected?) x

[Gizmo8282]

Hi sammy, I’ve got stage 4 endo on the bowel & have so much pain when I’m on not on Prostap, I had a laparoscopy 2 weeks ago , I’ve noticed your from the uk I seen a private gyno in Sheffield & he wrote to my doctor to tell them he would put he’s name to say it’s ok to stay on prostap long term as long as you take add back & he had a lot of patients that’s been on it for years, so maybe it’s worth mentioning? Hope this helps x

[Sammy455]

Thankyou yes im great when on the prostap finally got another course but they only allow me to have for 6 months the a 6months break honestly feel like your begging for help some days just got to wait 5 days for the actual gp to have an appointment for me to give me the injection now vicious circle.

[Kittitian-waves]

Hi SammyI am so sorry that you are having to suffer so much - and completely relate to the frustration of doctors not understanding and also anxiety of going to A&E.

My daughters endo has affected her life with such severe and debilitating pain that she has had 2 suicide attempts (she is only 20 yrs old). She too has been on prostap for 6 months , with a break and then another 6 month course and just recently we seem to have had some small breakthroughs:

We saw Dr Kazali , a private Gynaecologist who is highly specialised in endometriosis down in Woking, he reccomended Zalkia (don't know if I've spelt it right). It is apparently specifically for endometriosis. It has the same benefits as prostap but does not induce menopause - therefore has less health risks associated with it and you can remain on it long term.

He also advised that historectomy for endo is absolutely the WRONG thing to do and gave extensive reasons as why this is not helpful.

My daughter has had multiple admissions to A&E due to her pain. A&E is absolutely horrendous - but it has given her access to various other medical opinions as to how to manage her pain. She is also under a pain clinic in Liverpool and has previously been under a pain clinic in Leeds. So her treatment has been a long , excruciating journey of trial and error.

Her current pain medication regime is extensive and this is certainly not a reccomnedation for anyone else , but it has been necessary for her and offers her relief to help her function to some degree:

Paracetamol every 6 hours

150mg diclofenic per day

Nefopam - this is something that has helped her alot. Do some research to see if its something you want to ask your Dr about. You can go up to quite high doses on this too.

When the pain is very much in her belly (it's most often back and legs) she takes busscopam and finds this helps somewhat with the cramps and accompanying nausea.

Slow release morphine has helped loads. She is currently on 80mg per day. Which we are trying to reduce as its not ideal long term, but during severe flare ups has been a saviour for her. She used to be on slow release oxycodone, but although oxy is stronger , the slow release tablets are apparently not as long acting as slow releasing morphine. She also then has oramorph for break-through pain, but doesn't often need this. She has previously tried bupenorphine patches too as this offers constant slow release pain relief.

She takes various daily supplements, specifically magnesium is reccomended in relation to supporting pain relief.

Unfortunately, we have had to fight every step of the way to get help and support for my daughter. But I'm a big believer in 'the barrel that does the squeaking, gets the oil'. You have to be persistent and vocal to be heard and get the treatment that you need. If you suffer in silence, the system will quite happily let you stay that way.

Have you been reffered to a Gynaecologist that specialises in endometriosis? Have a look at which hospitals are accredited in endo care. I think most of these have pain specialists within such teams too. My daughter is on the waiting list to be seen at Wakefield.

There are also pain clinics that offer various options such as pain management programs looking at non pharmaceutical interventions such as health psychology, physiotherapy and other such support.

There is a a website that was shared with me from Wakefield gyny team that had some good info and resources, including a pain diary. These are a good tracker to help identify any patterns and trends and are helpful to give professionals a good picture of your health and pain when you get seen in appointments too.

beyouonline.co.uk/pages/abo...

I really hope you can get the help and support you need.

Hannah xx