Feel lost

[Purplepassionflower]

HiThanks for reading. I had a locum gynaecologist agree to put me on lap list and then I was called back in to say they wouldn't and he should not have agreed because of bmi. They did do an MRI and it has apparently come back all clear on ovaries and no good evidence for DIE. They are bringing me back in for a discussion on how to manage pain and I think just to be let down again. My dad is a Chinese herbalist and he is going to treat me anyway I suppose I just want validation as well on top of years of them saying nothing is wrong. With blood in urine, cyclical bleed from behind, vomiting and pain all the time. Any suggestions for the appointment.

[Fuchsiafairy]

Hi,

I really feel your pain! So didn’t want to leave you hanging.

Before appointment email the department and ask them to send you the guidelines regarding BMI and surgery. Ask what level it would it need to be before they would perform surgery. Request they add you to the waitlist for surgery as the waitlist is so long it gives you time.

Also MRI does not show everything. Mine showed a small amount of endo behind the uterus and a slightly enlarged uterus. My 1.5 hr surgery turned into 5 hrs. I was very glad I had pushed to be seen by the endo clinic. Everything was stuck to the peritoneum, adhesions and scarring. And superficial endo -EVERYWHERE. I’m so glad I was with the specialist as they had to do ureterolysis due to all the fibrosis. Honestly mri is not perfect and your symptoms should be what they base treatment on.

I would push for specialist endo centre referral, also ask to speak to the endo clinic pain specialist. I had my first pain appt today and just to be validated has been amazing. Also given various options and a referral to a different hospital to their pelvic pain rehab course. Ask if they have something similar? I

Bleeding when you pee or poop is so abnormal. Reiterate in your appointment that to not treat your illness is almost a form of torture! And also so hard to be physically active when in pain, even standing up to cook is beyond me most days so a lot of unhealthy oven food.

I think your dad might actually help you more so fingers crossed. Any chance your dad could come with you to your appointment to help you advocate for yourself? Or someone else?? I honestly think having someone who can stand up you for you can make a huge difference, so they know how much this affecting your life and that you are not exaggerating!

Also ask your gp for a full blood work up inc inflammation markers. If they are raised could give you some more information to take to your appointment. Also remember to stop all vitamins several days before your blood tests.

Fingers crossed that you get help, but push to be seen by endo clinic if possible.

What pain meds do you take and how often? Are you taking any hormonal meds? I was given mirena during surgery and that made my period so much lighter and I’ve had no blood in urine or from bottom since. Also I went back to doctors as pain was still so made and two months ago was given the mini pill on top of the mirena which is helping somewhat. But still not perfect.

Anyway I hope this helps even a little bit. I’ve been taking max dose paracetamol and diclofenac everyday for 2 years and adding in Tramadol and codeine for ovulation and on my period. I’ve just been prescribed a strong opioid patch to wear for a week at a time for when on my period and also something very strong as an extra called baclofen(?) I am hoping this helps. I’ve been told super addictive. And we will just be aware and taper off very carefully and slowly when ready. I’d already decided to stop paracetamol and diclofenac as I don’t feel they helped in long term. But recently the best thing has been my rechargeable heat and vibration pad from amazon. I feel it is more helpful than my tens machine. I’m going to buy a second so I can have one charging whilst I wear the other.

Wishing you strength and all the best for getting through this. Sorry for the essay!!!

Pam xxx

[Purplepassionflower in reply to Fuchsiafairy]

Thank you very much for taking the time to reply. I'm self employed in a very physical job so this has threatened my livelihood as well. I try not to take painkillers but when the pain is at its worst cocodamol and ibuprofen although there have been time when morphine injections haven't touched it. I will try to take my husband I'm just not sure if your allowed yet but I will find out. I'm a bit worried about the coil as I have a retroverted uterus and smear tests are near impossible and excruciating painful.Thank you again

[Fuchsiafairy in reply to Purplepassionflower]

when you have your appt, tell them how difficult smear tests are. Maybe they could give you some kind of conscious sedation to help. I have a retroverted uterus too, but had mine inserted during surgery.

You’ve done well not be taking lots of pain relief. But might be worth looking into something more effective. At the very least ask gp to prescribe nsaid such as naproxen or mefenamic acid, you might need a stomach protector too with these. You are best to take these before you have pain as they work best stoping the prostaglandins before they appear, less effective once in pain. Due to my ovulation pain basically continuing till my period, I took mine pretty much everyday. They are stronger than ibuprofen so a simple change that they can’t really say no to, hopefully will help you out a lot.

Plus if you are not being prescribed pain relief, the doctors may think your pain is not that bad. I used to struggle and try to do everything and then pay the price afterwards. There is no prize in being a hero. No one cares if you struggle on, they only notice when you can’t go on!!

best wishes x