New Doctor, pain relief, mental health - Endometriosis UK

Endometriosis UK

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New Doctor, pain relief, mental health

xnanookx profile image
3 Replies

Hi all, hope your all well :)

Basically my story is complicated so I'll start from the beginning;

I'm 30 yrs old, I had a miscarriage in March, that was when I discovered I have Endometriosis. Since then things have moved quickly. I'm due (8th October) to go in for Bilateral Laparoscopic Ovarian/Adnexal Cystectomy, they plan to slice off the top of both (chocolate) cysts that encase both ovaries and fallopian tubes providing it's not too sticky. My Pouch of Douglas is a cause for concern they think it may need to be 'rebuilt'. I also have nodules on my bowel that have popped through into the vaginal cavity. My Doctor has been the a big problem, she told me she wasn't comfortable treating me and refused to give me pain relief because 'I'm too complicated' so I've been surviving on over the counter meds that in all honesty haven't been effective for months. Cut a long story short I'm due to see a new Doctor this evening and I'm wondering if anybody can suggest an effective pain that I should request rather than just accepting more tablets that don't work? There's so many things happening in my body below are a list of things I want to focus on with the Doctor simply because they cause me constant problems, I do take Citalopram for Anxiety and Depression which needs to be increased, the Registrar was insistent I should be taking at least 120mg daily (I'm currently on 20mg and have panic attacks about 3 times a week) I'm also not sleeping and haven't had a good night's sleep since January, I'm literally running on fumes my tank is empty and it's making my mental state a cause for concern (my hubby is at his wits end with me he works long hours and needs to sleep) he's checked how many pills I take everyday for the last 3 months, he thinks I might hurt myself, but I'm careful (I think) I try not to mix too many meds and stick to one paracetamol based product along with 400mg Ibuprofen every 4 hours, I have been known to take 4 tablets (2 paracetamol with 2 400mg Ibuprofen) every 3 hours but that's on BAD days leading into, during, and after my period. So again I'm wondering if anybody has similar pain and what you used.

1) lower and mid back pain (feels like a trapped nerve/sciatica)

2) leg pain (on the right) joint pain and fluid around my knee (both knees locked and swelled yesterday)

3) arm and hand pain with numbness and stabbing pain in palm (similar to carpal tunnel) and fluid around right elbow

4) shoulder pain on the right side (it starts as a ball on the blade and causes a stiff neck, I've had frozen shoulder before and it's not the same)

5) constant abdominal pain (not my pelvis or hips it's a ball of pain between my ribs right where they meet, feels like indigestion but sharper and continuous

6) insomnia

7) Nausea

Sorry to take up so much time and thank you in advance for reading my story.

Thanks, Kelly <3 xx

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LadyVR profile image
LadyVR

Hi Kelly,

Sounds like you have really been through the mill there. I'm so sorry to hear your doctor would not give you pain relief that is so unfair. I was diagnosed with endo early May and have finally been prescribed co-codamol for the pain which takes the edge off slightly. It's 15mg codein and 500mg paracetamol. I can't take ibuprofen because of my asthma. I'm also on citalopram for my depression and that's at 40mg which most of the time settles me. I still have good days and bad days but that will never change.

As for the pain I get muscle ache in my neck, shoulders, lower back and legs. Massage helps but is expensive and doesn't last long unfortunately.

Interesting to read about your pain where the ribs meet as I have a lot of pain there too. It's why I was told my endo was just IBS for so many years.

I wake 2-3 times every night with pain and drives me / my partner insane. I am always tired and if I could would sleep 20hrs of the day everyday.

Hope things improve for you and good luck with your upcoming procedures.

Jessica.

If you hadn't already said you were going to, I'd have suggested a second opinion by a new doctor. Some GPs are scared of prescribing too many drugs and others are just downright ignorant; I currently take 5mg of morphine (oramorph), 30/500mg of co-codamol, 10mg of amiptripyline (which has helped me sleep a little better), 250mg of naproxen and 30mg of buscopan for the spasms.

If possible (i.e. with space), use a separate bedroom; my husband and I have slept apart for the best part of two years given my constant up and down with pain; as he is in the army he needs his sleep so we agreed to try this although honestly I prefer sleeping on my own. You may find being 'alone' in bed is more helpful as you can relax more about your sleeping patterns. Let us know what the new doctor said. if you don't get any joy with him/her, try another doctor...it took me ages to find the right one and went through about six GPs before finding one with empathy!

xnanookx profile image
xnanookx

Thanks girls it's much appreciated!

I spoke with the new Dr. she was very nice and she was honest about the situation. She said she wasn't very well read on the condition and she would like a few days to bring herself up to speed and asked if I'd mind coming back next week to discuss it further so I agreed, I felt like my options were limited and at least she's trying to understand.

Space is something we don't have a great deal of, we currently live with my in-laws which isn't ideal, we have one bedroom with 4 lizard setups and 2 dogs to contend with. Hopefully it won't be for too much longer we do have plans in place to be back in our own home just after the new year, that alone will help me tremendously, there's not a lot of down time here with so many people in the house (mum, dad, sister, 2 nieces, us, 2 dogs, 4 lizards and a snake) sleeping during the day can be...difficult!

Re: Pain relief

The new Dr. prescribed Co-Codamol, they make me feel really ill but I agreed something different might take the edge off the pain so I'm taking one 500mg every 6 hours with a single 400mg Ibuprofen should the pain get too much.

Thanks again for the replies it's good to know I can now go and suggest medications rather than be clueless and agree to things I'm not really sure of, I like to be prepared for the appointments.

Kelly x

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