What do I do?

[RLS94]

I am so sorry this is really long but I am at a loss as to what I should do and struggling waiting.

I have struggled with what I believe to be endo for years. I have always suffered with heavy, painful periods and pain in between my periods and I have been back and forth to my GP over the years. They tried treating me with different types of pill, implant and coil but nothing has worked. It got to a point where my old GP asked “what would you like me to do?” And proceeded to just prescribe me painkillers to just try and manage the pain. I gave up fighting for a couple of years and have just tried to manage the pain as best I could. The last couple of years have been unmanageable and I’ve missed many days of work. I finally managed to get my GP to refer me to gynaecology in October 2022 but I am still waiting for an appointment. I have had a couple of trips to the gynaecology emergency room in the local women’s hospital a couple of times since then. Both times I have been given strong painkillers that haven’t worked. I’m currently prescribed diclofenic, codeine, mefenamic acid and tranexamic acid to help with the pain. The last time I went to the gynaecology emergency room they had to give me morphine as nothing else helped. Last week I was admitted to hospital due to severe pain on my period. I was throwing up, couldn’t walk and had horrendous pain in my stomach, lower back, hips and legs. I have been to hospital with these pains many times before but was admitted due to serious pain in the lower right side of my abdomen which they suspected was appendicitis. I told them it wasn’t that this was a symptom I’ve developed in the past few months of my period. They did an ultrasound and found that I have a slightly “bulky” right ovary that was in contact with my uterine wall. I don’t understand what this means as it wasn’t explained to me and I was discharged and told to continue to wait for my gynaecology referral. I’m at my wits end. I feel completely dismissed and like I’m never going to find answers. I’ve considered going private but I know that will leave me in debt and is not something I can afford. Does anyone have any advice?

[Jen_dog]

sorry you are struggling. Go back to your GP and ask them to push for a referral appointment faster: what you are experiencing is unsustainable and not on. They probably won’t do anything, but you need to “have it on record” so to speak. Then contact PALS: list down every hospital visit, time off work etc, and things that have been tried. Also keep going back to hospital when the pain is unmanageable, or if the bleeding is out of control.

The way they have described your ovary sounds like endo adhesions.

Private is very expensive and not always the best option: especially if they just do an exploratory lap.

[RLS94 in reply to Jen_dog]

I received a text from my GP and was asked to make a follow up appointment to discuss my test results following my hospital stay. Finally got one this morning only to go and they just read my discharge notes to me but didn’t explain what any of it meant. I got a bit upset because it’s just another waste of time and not getting me any nearer to an answer. She told me to contact the hospital again because it was in their hands now so I’ve spent the past 2 hours trying to get through to the hospital only to be told to go back to my GP to send in more information even though they have the notes from my hospital visits. I’ve honestly had enough.

[Jen_dog in reply to RLS94]

I would contact your GP practice manager and make a formal complaint (using the words “formal complaint”) - you should be able to get PALS or locally patient support involved to help you.

[RLS94 in reply to Jen_dog]

There was a lot of back and forth between the hospital and GP but I finally got my GP to send an expedite letter to hopefully speed up the process. Enough is enough now I’m not being fobbed off anymore x

[ccfd9]

Hi

Have you considered looking at nutrition to help? Many women can ease the pain by eating an anti inflammatory diet. Wheat can be an issue as well, have you tried eliminating all gluten from your diet, it is not easy but gets easier. This can have a big effect for some people, others find bovine dairy is an issue. Most bovine dairy is inflammatory.

You could read Dian Shepperson Mills’ book “Endometriosis: a key to healing and fertility through nutrition” for help and inspiration.

[RLS94 in reply to ccfd9]

I’ll have a look into it thank you!

[Roxita in reply to RLS94]

Really sorry to read what you've been through 🫂

I came to your post to say a similar thing about nutrition. I have not suffered half as much as you have, but been through a lot as well. In between waiting for next drs appointment and trying to make sense of what's happening to my body I also read Dr Dian Shepperson Mills book. And also a book by Dr Sara Gottfried called "The Hormone Cure". These have been a complete game changer for me! I've managed to reduce my pain levels from 7/10 to 3/10 recently. Also my periods are way less heavy than before. All this with some nutrition changes (nothing drastic actually, but it will depend on what you are eating at the moment of course) + some basic supplements from Boots (omega 3s, magnesium, multivitamin, turmeric) + small lifestyle changes.

The irony is that I'm still waiting for my next gynaecology appointment to discuss what my options are because as far as he is considered only options are laparoscopy + mirena... it will be an interesting conversation now that I've got those good results whilst waiting for appointments. Dr Sara Gottfrieds book is good for it as well - she even has a chapter about advocating for yourself and what to ask if/when doctors next time ask "what do you want me to do".

I wish you best of luck! Just know that there is hope, its not all as hopless as NHS makes it be. I have no doubt thay if you read The Hormone Cure you would get some good steps to take forward and take charge of your body again xx

[RLS94 in reply to Roxita]

I’ll have a look into these thank you! I’m willing to try anything if it means I don’t have to carry on with this pain anymore. Xx

[AllthatGlitters]

Hi sounds like you are having a horrendous time & sending a virtual hug to you.

Firstly your GP can email gynaecology to expedite you, which means you get seen sooner by the gynaecologist. They can tell the secretary how bad your symptoms are, how they are effecting your daily life and how long you have been living with this.

Another option is to pay for a private consultation at a private hospital (rhey arenoftbe the consultants you see at the NHS), where I am the initial consultation is £200 and you can then tell them you want to go back on the NHS waiting list for surgery/scans etc as you can’t afford to do the whole thing privately. You can also ask them to put you on the “urgent” waiting list, instead of a category 2 or 3 list.

I was told for years that I had IBS when really it took me to move away, register with a new GP which took me seriously.

I hope some of the info I have you will help, I speak from my own experiences, you really have to be good at telling the health professionals what you expect and what you want.

Xx

[RLS94 in reply to AllthatGlitters]

After going back and forth between the hospital and GP (both claimed I had to speak to the other) I got my GP to send an expedite letter today. Fingers crossed that will speed the process up. I’ve also looked at a private consultation and can get an appointment for Tuesday so I am considering it just to even have a conversation with someone who knows about what I’m going through. Thank you for your advice! X

[Cailleach]

If the morphine helped you could ask your GP to prescribe Oromorph to be used when you are in extreme pain, or you could ask about Tramadol. These are opiates so you could take the codeine at the same time, but they will explain that,

With the diclofenac, do you take it all the time or just during your period? If only for your period, it can be more effective to start it a couple of days before. Anti-inflammatory meds need a couple of days to build up to full effect.

Your ultrasound result sounds definitely like endo, Hope you ge t your appointment soon.

[Cailleach in reply to Cailleach]

Sorry, should be couldn’t take the codeine at the same time as tramadol /morphine!