Struggling beyond words

[cl1986]

I've been diagnosed with severe stage 4 endometriosis, and I'm at a complete loss with how to handle the pain.

It has spread to my kidneys, bowel, bladder, uterus and both ovaries. On wednesday this week I have to have urgent surgery to put stents in both my kidneys to save them because of the damage caused.

I've not got a date yet for the endo surgery as they're focusing on my kidneys first. But because of my kidney issue they are struggling to find tablets I can take for the pain.

I'm an emotional wreck and so exhausted from the pain. If anyone has any words of wisdom then please share. I'm at a loss with how to cope. Not to mention the worry of not being able to have children with my husband.

Thanks in advance xx

[Hidden]

I am so sorry to hear about this. I was wondering whether the doctor has mentioned that you could use a TENS machine for the pain as it is difficult for you to take tablets? This is on the NHS website:

nhs.uk/conditions/tens/page...

I would run it by your doctor first as to whether it is OK for you to use, I can't see a mention of not using it if you have kidney problems but best to get that confirmed.

I have my fingers crossed for you on Wednesday and hope the kidney surgery goes well.

For the endo surgery, are you seeing an endo specialist at a BSGE centre to get the endo excised? If not, I would ask for a referral to see a specialist.

Thinking of you and I hope this helpsx

[Hidden]

Hello my lovely,

I am sorry you are in so much pain and distress. Believe me, I've been there..

Just under a year ago I was diagnosed with Stage 4 too. My organs were all stuck together. They were in a terrible state and all stretched, and messed around with Adhesions. I was lucky enough to find an amazing doctor near Leeds who performed miracle surgery and cleared me of all endometriosisis. My organs (bowel/uterus etc) are all back where they should be, I am pain free and he recommends my husband and I to try naturally for a child!!! It USA long operation BUT you WILL be up and out walking the next day and back to yourself in a few days. I wish someone had told me about this sooner. I feel free and healthy again. Good luck!! Pm me for details if you like!!! It will all work out... He's AMAZING XXXX

[mollymm]

Hi there. I'm so sorry for what you're going through. I just had my latest surgery on stage 4 endo. Mine was liver diaphragm bowel bladder and uterus/ovaries. They operated on the uterus and ovaries in January but I had to wait till last month for repairs to the other damaged organs and to get rid of the endo. I'm feeling better already. Horrid but better. Please please note that it can't just be a specialist BSGE centre. They are specialist gynae centres. You need a BSGE SPECIALIST ENDOMETRIOSIS CENTRE. Those guys work on endo all day every day and can repair your body like no one else can as a result. I too had some problems with pain relief as opiates made my bladder stop working completely so I'm on gabapantin which had really helped. I'm guessing that that's not an option for you? It must be a nightmare not being able to take anything for the pain. Like the other ladies have said TENS and heat help a bit. Do you have a endometriosis specialist nurse? If you're at an endo centre they usually have one and they're really helpful coordinating with other departments so would get the best answers re pain relief and your kidneys. Also, ludicrous as it sounds under the circumstances it's really important to try to keep your stress and anxiety level down as that really does make the pain worse. I had some energy massages (like reiki) I don't understand it at all, but I'm convinced it helped me. The lovely lady who did it also had endo and seemed to be able to go right to the exact point of pain (within a cm) with her hands each time. sending you a huge hug and very best wishes hoping you get your next op swiftly and successfully. Xx

[cl1986]

Hi all, thanks for your messages.

At my hospital they have a team that specialises in endo so I'm lucky on that front. All the different departments are having to talk to each other because it has covered so many different areas of my body.

My doctor prescribed me tramadol to help with the pain but reading the leaflet I'm not sure if I can take it. So I'm currently waiting for a call from the specialist as to whether I can take it. If I can then at least the pain will be more manageable.

I'm just so exhausted and tired and even when I do sleep I'm so heavy I have to get up anyway. I literally cannot wait for this whole thing to be over.