Possible endometriosis

[KB08]

Hi everyone. Iv been having awful flare ups for the past year and they are getting worse. I'm currently going through one and iv been so ill. It started with really bad pain and throbbing in my hips and pelvis, constant nausea, diarrhoea, aching muscles and joints, headaches and the weirdest symptom is pins and needles/numbing feeling in my hips and legs. I'm waiting for a referral for gynaecology but I honestly think my GP doesn't know what to do with me. Just wondered if anyone who has endometriosis have had any of these symptoms? I'm finding this really hard to deal with now and it's affecting my mental health massively

[Moon_maiden]

Hi

What has GP given you for pain and nausea?

Metoclopramide works well for me for nausea. I’ve tried various pain relief, at the moment Duloxitine, Oramorph, paracetamol and sometimes Diclofenac suppositories. They are particularly good for lower abdomen/ pelvic pain.

Your GP can try and speed your appointment up with Gynae by writing that your case is more urgent, if they are willing.

[KB08 in reply to Moon_maiden]

Hi. Thanks for your reply. So far just paracetamol and codeine. They almost put me on amitriptyline but want to get a proper diagnosis first. These flare ups have been going on for a year and so far iv had no joy in anyone being able to tell me what it is. I actually have a phone call with my doctor on Monday so I will definitely ask if he can escalate it. The constant nausea is definitely the worst bit 😫 just feel horrible all the time. Especially after eating.

[Moon_maiden in reply to KB08]

I’ve tried Amitriptyline the Duloxitine works better and of that family only the Duloxitine has tested for giving pain relief. Not sure why they want to wait. Ask about the Duloxitine instead.

Ask about the Metoclopramide it’s been brilliant for nausea, it’s kind of my dessert after a meal 🤣 there are others that are anti nausea but I find this works.

If you want a non opiate painkiller then there is Nefopam, GPs don’t always prescribe it as it’s more expensive, but if they start on about opiates you’ve got this in reserve. The pain nurse put me on Tramadol at one time which helped for a bit, she said it was better for Endo than something like codeine. Taking paracetamol regularly can help prevent build up but ask for it on prescription as you can only buy two packs at a time.

Do you pay per prescription or yearly, or free? If you pay get as much as you can per item especially with paracetamol as it’s really cheap.

There’s a med called colofac that might help with digestion, it’s for bowel issues.

Not sure if this helps or hinders, but mainly don’t put up with suffering. Lots your doctor can do 🙂

I’ve also tried cannabis on prescription but it wasn’t much different to Oramorph but that’s free.

[KB08 in reply to Moon_maiden]

Thankyou for your advice. I'll be sure to discuss my options for pain meds tomorrow with the doctor. I just want an answer for what is causing all this and if it is endometriosis. Could be a long time coming though

[Moon_maiden in reply to KB08]

Let us know how appointment goes. You know something is wrong, don’t let anyone say otherwise, you aren’t imagining any of it.

[KB08 in reply to Moon_maiden]

So I had bloods done on Monday which I should hear back about by the end of tomorrow. But I know exactly what will happen. They will just come back normal AGAIN and then they won't know what to do with me. Iv spoken to the hospital today and they've said its a 5 month wait 😳 so I'm definitely going to ask him to change it to urgent because there's no way I can wait that long. I'm so concerned with all these leg pains and pins and needle/burning sensations

[Moon_maiden in reply to KB08]

Hi

My bloods nearly always normal, they always are with this, at least it’s a check just in case nothing else is wrong. If you get online access to your medical records you can see results, letters, consultations with GP, very useful.

I wouldn’t be worried if nothing shows, doesn’t mean nothing is wrong with Endo.

🤞 you can try and get things moving, don’t ask in a way they can say no. Give an explanation as to why first then bring it up.

[Cocoacupid]

Yes hun I have these symptoms but you need to keep pushing for Gynecology in 2021 my symptoms were getting bad was constantly in a and e as I couldn’t pass urine properly I only had my lap this year and it was a blessing to have a diagnosis but normally gynecologist to have a diagnosis lap on nhs takes about two years to have one I was going to be part of a trail so I would have been seen quicker. As the pain got worse and worse a locum doctor referred for emergency lap and I had a cancellation . X you do need to push maybe see a different doctor who will look into this for you.

[KB08 in reply to Cocoacupid]

Thankyou for your reply. Oh goodness that sounds awful bless you. I will definitely push for my referral as this has been going on far too long and it's just getting worse and I'm having to take time off work when I feel really bad

[HT267]

Hey KB08,Your story sounds very similar to mine, 100% keep pushing for the referral to be escalated your body is telling you something is very wrong so font let the doctors minimise your symptoms. Once you are referred keep calling gynae reception for an earlier appointment as sooner you get the appointment the sooner you can go on the list for a laproscopy . In the year up to my diagnosis I went from having my usual painful period and ovulation to being in pain basically everyday and being unable to exercise with horrendous fatigue and I was too polite and thought I was being dramatic about my symptoms as it turned out I had endo and lots of adhesions which was making my pain worse. I wish you all the best and hope you get some answers soon xx

[KB08 in reply to HT267]

Thankyou for your reply I really appreciate it. I'm glad I'm not going insane and someone else has had the same issues. As horrible as it is! Sometimes I just feel like they don't take it seriously enough. I will certainly push for my referral to be sorted when I speak to the doctor tomorrow. Its been going on far too long and is just getting worse. I even get inflammation on my skin and get the worst cystic acne. Huge lumps on my face and scalp. I feel like it's affecting every part of my body.