Managing pain / Advice on awaiting diagnosis

[LynsB1]

Hi,

Looking for any help or advice in managing pain. Im 28 and have been struggling with my periods for years. This past year has been the worst with multiple hospital visits and currently each month on codine, menfamic acid/ buscopane and diclofenac suppository. I am finding that the pain is that intense that I am passing out/fainting/sometimes can't walk.

I have been to the doctors multiple times they said they think its endometriosis but I need a hospital appointment to confirm this. I have been referred to the hospital last year but they have told me its a years wait list to be seen by a gynaecologist. Last month I fainted on my plane travel home which was extremely embarrassing for me even though I had taken my pain killers an hour in advance.

Myself and my husband are ready to try for children but every month I'm struggling with the pain, its affecting my work and the rest of my life.

Any advice on pain management or how to cope with the wait to see a gynaecologist?

Thank you,

[1Poppy1234]

I paid privately for an appt just to try and get treatment I saved for it worth every penny I got the hormone jabs thru the NHS. I recommend it if you can.

[LynsB1 in reply to 1Poppy1234]

Thank you, at the moment I can’t afford private so I’m going to try save for some help

[MangoStickyRice]

So sorry you are going through that each month. I second  1Poppy1234 - I paid privately also to shorten the wait. Mine was shortened from 4 months (from getting the appointment: Private hospital under NHS) to 2 days (by doing self pay). It’s a crazy difference but if you can afford it it’s worth it to get ahead on your diagnosis journey. Mine was £200 and it seems like that’s usually similar to others but I guess might be more if you live in London etc. in the end I actually got a second opinion as the first private one told me false information (was a general gynae and told me that I couldn’t have Endo as they couldn’t see it during laparoscopy). My recent consultant (an Endo Specialist) said that if the individual is not experienced (eg is general gynae) they will likely miss Endo unless it’s the most obvious form.

I would research private nearby but also Endo centres nearby - if you have the choice between the two (can afford a consultation at either) I would suggest the Endo centre. If you don’t have Endo at least they will be more likely to be able to tell you. Whereas if you start with general gynae they might misdiagnose or have you go through surgery and still not identify it.

Hope you get some answers. I’m in the Midlands - if you are too I’m happy to message you with who I’ve seen so far on my journey.

[LynsB1 in reply to MangoStickyRice]

Thank you, I’ll definitely research, when I got quoted for private it was very extortionate and a price I just couldn’t afford but will look into more options around my area and I’ll definitely ensure that it’s a Endo specialist - thank you

[Endo_warrior01]

Hi there,

I also struggled with the wait and couldn’t afford to go private. It might be worth contacting the gynae secretary or the central bookings team and stress that you are really struggling with your symptoms and they might be able to get your appointment expedited. Failing that, asking your GP to email to try and speed things up.

I am waiting for my diagnostic laparoscopy and in talking to the secretary and getting my GP to email, I have been bumped up the list and changed to a higher priority.

Also regarding the pain relief. It could be the codeine that is causing you to feel drowsy and faint? Or do you feel it is the intense pain that is causing it? Either way they need to review your medication and find something that works better for you. I have found it involves a bit of trial and error. Give the GP a call. I know how difficult it can be to get them to listen and acknowledge how you feel but keep pushing. We have to advocate for ourselves and you shouldn’t be expected to deal with these high levels of pain.

Sending hugs. 💛

[LynsB1 in reply to Endo_warrior01]

Thank you,

My doctors have referred me to a pain clinic within the hospital but again they’re saying it’s a wait list. I’m going to try speak to the secretaries and see if they can help in anyway.

In regards to the fainting I find it happens before I take the medication more times than not due to the intense pain, but sometimes it is after I’ve taken my medication, I will definitely speak to the doctors over that to review if it’s to do with the codine thank you! 💖

[Endo_warrior01]

I was lucky the secretary I spoke to was so lovely and so empathetic. She got a message to the consultant directly and within a week I had a telephone call to say they would expedite my surgery. Out of all the health professionals I have spoken to that gynae secretary was the most helpful and compassionate of them all.

I hope you get the help you need. Take care 💛🙂