I am in unbearable pelvic pain. Please advice me on how to get scans and treatment done for endometriosis during this pandemic.

[AnushaRatnam]

Hello everyone,

I am Anusha staying in UK Nottingham.

I need your help. I am have been getting irregular and unbearable painful periods from 6 months. From last month I have severe and unbearable abdomen pain in the pelvic region. It’s getting worse every passing day. I’m in a state now I can’t walk, stand nor sit for more than 2 mins. I have visited ANE many times they have done CT scan for kidneys done a couple of blood tests, urine test and preganti test which have all came negative. Recently last Thursday I had been to ANE and was advices to take 2 codeine 30mg tabs every four hours. When I have spoken to my GP recently they have asked me to wait for ovaries scan and it would take time as there are no appointments available. I feel miserable and worthless with this pain. I have been dependent on my husband to for each and every day to day activities of mine. I’m mentally stressed though I have a supportive husband. As long as I use the tabs I’m with less pain if I don’t take the tab and delay for an hour or so my pin worsen to that extent where I can no more bare the pain.

I recently started feeling a lump in my pelvic region and it hurts entire left abdomen .

I am not sure what I should be doing at the moment. It’s very expensive in private. And it’s around £200 just for ovary scan. Can anyone suggest me what should do to help myself. I am a strong person but I have been getting very emotional every day with this pain. It’s been a long time since I lived a normal life.

Please guide me how should be going through the treatment procedure. I assume it to be endometriosis.

Thank you for taking your time to read this and reply.

I appreciate your patience.

[Weaver281]

Hi there, sorry to hear you are suffering with so much pain. It sounds like your GP has referred you for a pelvic ultrasound, this will show up any issues like fibroids, ovarian cysts etc but it won’t show if you have endometriosis. If you can feel a lump, it’s possibly a fibroid. I have lots of fibroids and they have got quite large and can be very painful and cause irregular periods and very heavy bleeding.

I’d speak to your GP again and explain you are in a lot of pain and discomfort and ask if they can prioritise the ultrasound request as the quicker you get the scan then they can refer you to gynaecology to see what treatments you may need. In the meantime are you using a heat pad or hot water bottle to help ease the pain? I find heat helps a lot to ease the pain, especially a soak in a warm magnesium bath (Epsom salts)

I’m following nutrition advice from a nutritionist as well, eating loads of fruits, veggies, salads, no gluten, no refined sugar, very minimal dairy, no refined carbs, organic meat and I take iron tablets, magnesium, zinc, b12, iodine, and some other minerals to support my adrenal glands, liver, gut and kidneys.

Hope the appt for your ultrasound comes through soon, best wishes x

[gettingusedtoendo]

I am so, so sorry you are going through this. The hardest thing is getting across the severity of pain to another person. IMO if the pain is unbearable you need to get yourself to A&E, even if you have to keep doing it.

[CurlyandConfused]

Sorry you are suffering so much. I have large cysts and have been referred but told it's up to a year to see consultant and then another 18-24 months to get surgery. I am in a different area of the UK though but guess waiting times are long everywhere.

I would go back to GP for pain management. There are much stronger things to try than co-codamol... and take the meds regularly. it's harder to control pain once the pain comes through than getting ahead of it with pain killers.

if it is particularly bad, i would go back to a&e.

chase the scan with the GP. initial ultrasounds usually don't have that long waiting times.

[Weaver281 in reply to CurlyandConfused]

Hi CurlyandConfused are you waiting on a gynaecology appt from your GP referral? I was waiting since start of Oct last year and hadn’t had anything so chased this with my GP in January - I,ll post below the info I found out as I was able to book my own gynaecology appt myself and this could help you too.

[CurlyandConfused in reply to Weaver281]

I spoke to the gun department. They have the referral there just no appointments. Seems my area is particularly bad. It's nothing I can book via the website unfortunately but great that you made progress.

[Weaver281 in reply to CurlyandConfused]

Ahhh I’m sorry to hear that, I really hope something comes through for you soon. It’s so frustrating waiting for that next step. I am in South Norfolk and my hospital is West Suffolk so I think I have been lucky, but if I hadn’t chased things I may have waited much longer, my GP didn’t even know about the NHS e-referral website, there’s so many different admin processes and systems they use which don’t seem to talk to each other very well. Can you travel to another hospital if they have a cancellation? Sometimes if you say you are willing to travel you can be seen quicker. Best of luck 🤞

[CurlyandConfused in reply to Weaver281]

all hospitals round here have similar waiting lists. I would just join another long queue. I am in a area which had consistently high Covid numbers for a year - no routine operations/appointments since last March. I think that is the reason it's particularly shitty where I am.

[Weaver281 in reply to CurlyandConfused]

I’ve just found this out after chasing up my own Gynae Referral with my GP which had been referred urgently across to NHS at the start of Oct 2020. I assumed you just sit and wait to receive an appt through the post. I had thought it was taking a long time due to the pressures on hospitals and staff due to COVID. This is not the case!!

You need to be registered with Patient Access- patientaccess.com/ This website is where you can access your GP medical record online. On the menu you’ll see Consultations - if you have been referred there will be a record of the 12 digit number and a password - this is the info you need to access your referral on the nhs referral website. You also need to put in the year of your birth.

Once you have logged into the referral website - refer.nhs.uk/login - you will see your referrals there, you can then choose to book your own appointment and even choose the clinic or hospital you want to go to! I’ve just booked my own appointment for 13 days time and I can’t quite believe it!!

So please don’t wait, thinking you’ll get an appointment in the post, it may never come and that’s not because of COVID-19! I’m still a bit stunned I wasn’t given this information sooner and I really hope it helps someone else who is waiting for a referral too 🤞

(You can ask your GP receptionist for the referral info too, if you don’t want to register for the Patient Access.)

[Meworange in reply to Weaver281]

Omg really how did I was not given this information so were can I get the information from? And the reference code?my refferal got messed around so many timei had enough ideas ment to be referred in September last year nd instead found out I was never referred at all till January this year!! Now they are telling me to wait for another bloddy 6 month that's nit on! Its nit even my mistake

[Meworange in reply to Meworange]

Also I been told by the hospital secretary that I'm on a waiting list to see the consultant

[AnushaRatnam]

Thank you everyone for your thoughts and information. I had been to hospital yesday again due to severe pain doctor told me that they will push my scan lil forward. I am still not sure how long will it take. I am thinking to get the scan done privately. Is anyone aware of an affordable place where I can get my scan done. I stay in Nottingham.