Please help, so scared that this will nev... - Endometriosis UK

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Please help, so scared that this will never be sorted.

Mitch15 profile image
5 Replies

I have had pelvic pain for over 3 months, almost every day. Initially was told that I had a haemorrigic cyst, which disappeared, then last Wednesday had a laparoscopy where the consultant found and removed a large amount of endo, which was binding my ovary, Fallopian tube to my abdomen and it was all over my bowel.

I came out of the hospital a bit stunned that I had endo, but relieved that at least the problem had been found and sorted. Or so I thought.

Six days on, I still have the same burning and prickly sensations along with the same old one sided ache. My back ache which had improved recently has also returned. So if anything I feel worse than when I went under the knife.

My consultant is an expert in endo (along with many other things) and is the clinical director of gynaecology at the counties biggest hospital. So I don't doubt he has done a brilliant job. So why am I still in so much pain?

My husband is now sick of me moaning about my pain, and I just wanted some advice from people that know about this stuff! The thought of having this pain for the rest of my life is terrifying....please help :(

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Mitch15
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5 Replies

Hi Mitch15,

Sounds like you have had a really scary time. I am sorry to hear that you still have a lot of pain after your surgery last week. It isn't unusual to continue with pain after an op like you've had. There is a lot of internal healing to happen and sometimes things do get worse before they get better.

You might want to have a look around on the Endo UK website for some more info about the condition to help you understand better what is happening to you. endometriosis-uk.org/inform...

At this stage after surgery it is important that you rest enough, take pain killers as you need to, eat healthily - including getting enough fruit/veg & drinking plenty of water so that you keep your bowels moving easily, do some gentle exercise like walking and be kind to yourself. The condition, the hormones, the anaesthetic and the shock of the diagnosis can all leave us feeling really out of sorts at a time like this.

It took me several months to feel more comfortable after my first lap, hang in there!

:-) x

Lillybob profile image
Lillybob

Hi there had exactly the same kind of experience except I'm wombless so it's on my bladder, cervix and right pelvis. Was excised and cauterised, no after care advice so pretty much a blind recovery and I'm only just feeling more normal on wk 4. Still sore in the cervix area. My gp said to imagine the excision/cautery on the outside of your body and how painful and sore that would be and how long that would take to heal. Keep popping those pills! Good luck. Lx

Mitch15 profile image
Mitch15

Thank you for your replies. Even with painkillers I still have a prickly sensation at the tops of my legs, what could be causing this?

I expected to come out of surgery doing cartwheels at being pain free, I am so low.

in reply to Mitch15

A "prickly" sensation could indicate some nerve bruising or nerve damage. I would call the hospital ward or your GP for advice.

X

Sounds like you are really lucky on the consultant front but slow down - 6 days is not enough time to have healed in. Also the areas that are painful are often the areas you were treated so I don't think it sounds odd that they still hurt. I don't think enough information is given to patients about the healing stage afterwards at all, it can be worse then the original pain you are being treated for but it should settle down. It takes time and you need to be kind to yourself and put your health needs first. You need support and help at this stage. Don't panic yet about what the future may bring, try and take it one day at a time but do get as much information as you can. As for being in pain for the rest of your life? Try not to worry about something that may never happen. I have long term health issues aside from endo (which is enough in itself!) and am in constant pain and have been for about 20 years. Somehow people do manage and you can have a good life. I have good days and bad days but there is a certain amount of pain that you really do get used to and you'd be surprised at how well you could probably cope. That does not mean that will happen to you though - I was born with other problems. If your husband is sick of you moaning about the pain, well, I have some very robust thoughts on that!! I do wonder what on earth is in some men's heads! He should be looking after you at this stage! I don't know, let's just assume for the sake of argument that you may perhaps moan more than average, although I seriously doubt it, you do have a really good reason right now! You are going through a hell of a lot both physically and mentally and he should be front of the queue to support you! You are scared and want to be listened to. However, if it's too much for him (huh) then maybe try to use other avenues, like here, to have a good whinge and rant about how much you hurt and how you feel and to discuss your fears. I'd be tempted to get your doctor to explain things to your husband (if that hasn't been done already). You are still healing and he needs to understand that it isn't a quick fix and you need him to be there for you. Good luck. x

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