Can someone help with a few questions ple... - Endometriosis UK

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Can someone help with a few questions please? xx

louisepercy2000 profile image
14 Replies

Hi guys, i was just wondering- how long was your timeline from being referred by a GP/Specialist to then having an USS or even lapa surgery?

The pain is now constant now that i am not on my period and has moved to the lower left of my back and thighs. I keep feeling light headed and feel like i need to be sick because of the pain i am in. I was up all night crying and this morning crying because of the pain and how much i just want it gone.

Do i pester my doctor or what!!??

I have taken nearly all of my Mefenamic acid which the doctor prescribed me (anti inflammatory) and also paracetamol and ibuprofen doesn't work!! ☹️

help please xxx

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14 Replies
Glondon1 profile image
Glondon1

Hi I waited 2 weeks as I was under a general gynae and had 3 trips to a&e for excessive bleeding and pain for a laparoscopy but refused it as she wasn't specialised in endo. I've been referred to a endo centre and my appointment with a consultant is the end of the month. So in all that makes 6 months. Such a long time but hopefully it'll be worth it. Have you had any other tests or diagnosis yet? x

louisepercy2000 profile image
louisepercy2000 in reply toGlondon1

I am yet to attend my USScan on the 6th July due to the pain and symptoms I am feeling, however one doctor had sent me this appointment and another doctor said bleeding 3 times and having severe leg spazems to the point I cannot go to work or college is NORMAL! I'm fed up of the pain!☹️ the USScan will be the first 'treatment' I will have received so far x

Glondon1 profile image
Glondon1 in reply tolouisepercy2000

Nooo! It's def not normal. I have PCOS and thought it was just the symptoms from that. I had shooting pains down my thigh, back and rectum, stabbing pains in the vagina. The ultrasound will just show PCOS or any cyts. It won't show endo. Have you taken any contraceptives for the flow/pain?

louisepercy2000 profile image
louisepercy2000 in reply toGlondon1

Owch! Well I have been taking contraceptives since 13 because of my period and had to change the methods many times because of the side effects and I am extremely prone to migraines. I am currently on the mini pill which I take everyday without a break. But it just seems recently I have been bleeding constantly! And the mefenamic acid I was taking was meant to be for the flow and pain too however didn't work :( xx

Go back to your GP and tell them you need more pain relief. Mefenamic acid alone isn't enough for severe endo pain. It's used to treat mild period pain because it works on the uterus. It's useless once you've passed that stage pain wise. There are lots of other things you can combine it with (codeine, diclofenac (the suppositories are brilliant), tramadol etc). It is supposed to help reduce bleeding if you take it before your period starts but I found it didn't help with that. Tranexamic acid is an alternative you can ask for to reduce bleeding but be aware that this is not for pain relief so make sure you get the pain relief as well. You can also ask for anti sickness (ondansetron) which you can take at home - it's a good idea to get this if they give you codeine/opiates as they can often make you sick. You can take all these things while you are taking the pill (which never worked for me either).

In terms of the wait - for me it varied. I initially had an ultrasound very quickly because my ca125 was raised and this gets you fast tracked in so they can rule out ovarian cancer. I waited 7 weeks from initial referral to see the gynae at my local hospital, and another 8 weeks for my first lap. He faffed around a bit and took 5 months to refer me to a specialist centre in London (bsge centre) and unfortunately the wait there was really long, but it was worth it.

Hope this helps. x.

louisepercy2000 profile image
louisepercy2000 in reply to

Thank you so much for the reply and information. Will get in touch with a doctor tomorrow and hopefully they give me an appointment for that same day!! I will definitely ask about the pain relief and anti sickness tablets/medication to take home. Thank you again for the info it's help me a lot, hope everything's alright xx

Memw profile image
Memw

Hi, I first saw a doctor who referred me to a specialist in Feb, my first lap tomorrow. Between then has been three internal exams, blood test, paps smear, trailing the contraceptive pill for the first time.

I am in Australia and on privet healthcare so I think this maybe a reason I have been able to have the surgery this quickly. I was lucky my general doctor found a good specialist who never pressured me to do the lap but was happy to do it, to give me answers.

You know your body and what it needs, trust your pain, perhaps looks for a different specialist.

Lots of love particually on those painful days X

louisepercy2000 profile image
louisepercy2000 in reply toMemw

Thank you!!! Will keep you updated, I'm going back to the hospital now because of the pain and to see if they can give me some stronger pain relief xx

Memw profile image
Memw in reply tolouisepercy2000

You tell them girl!!! Good luck X

louisepercy2000 profile image
louisepercy2000 in reply toMemw

Hi! I have just got back from the hospital walk in and they have sent me home with Codeine Phosphate for he pain. They are telling me to go and see my GP for blood tests because they apparently cannot do them however once the doctors send off the bloods they go to the hospital anyways!!! The doctor who told me 3/4 periods in a month and the severe abdominal pain is NORMAL is going to ring me and discuss what we can do. I really don't want to speak to him because I feel so let down that he could say the pain I am going through is bloody normal!!! X

chloe3011 profile image
chloe3011 in reply tolouisepercy2000

That amount of pain is certainly not normal. The codeine should take the edge off the pain, stick with it and don't give up ask for a referral to see a gynae. I feel for you so much because after trips to A&E fainting, vomiting because of the pain I was still told it was normal. Thinking of you x

louisepercy2000 profile image
louisepercy2000 in reply tochloe3011

❤️

louisepercy2000 profile image
louisepercy2000 in reply tolouisepercy2000

Update- was sent to the doctors from the hospital because apparently the hospital couldn't do blood tests on me however when I got to the doctors they have sent me back to the hospital for blood tests??? My doctor said (no surprise) it's just my period pain and the pill I am on causing me to have the severe pain. x

Memw profile image
Memw

Maybe you should do a post on here for decent doctors in your area to try to get a referral to them??

(I'm for Australia so not much help and unsure of your medical system)

Sending love xx

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