waiting for diagnosis

[Emmaja_ne]

hi, I’m new to the forum. Over the last 6 months I’ve been back and forward to the doctors and have finally been referred. They are referring me to gynaecology and the colorectal team. (I did go to my GP 3 years ago with mild symptoms but was just put on the pill)

My question is do people have symptoms every day or just during their periods? I have cramping and back pain every day of my cycle but 100x worse during ovulation and my period to the point I almost faint on the toilet. Does anyone else have this?

Thanks x

[SasF]

Hi Emmaja_ne, welcome to the forum! Unfortunately, I find there are only a few days each month when I'm not affected by evil endo. It's nasty during my period, gradually fades, but then ramps up during ovulation, begins to fade again, but then I hit that pre-period phase when it reminds me of its existence, inciting a feeling of unescapable impending doom!

Yes, I've fainted on the toilet! I've added a pillow to my 'endo emergency basket' which lives beside the loo - water bottle, painkillers, ginger, sick bowl, pads, tissues, etc. I thought the pillow might cushion the fall if I topple off!

I'm so sorry to hear you're going through this. I hope you find this forum useful. There are lots of wonderful ladies who will no doubt offer advice and support whenever you need it. Just ask. Take care of yourself x

[RueBlu3]

Hello! I was the exact same, constant pain every single day and then it got even worse on my period. Mine has kind of progressed to the point that it's at that "period level" every day now which totally sucks.

I've also fainted many times from the pain during my period, but I keep an emergency supply bag for nasty symptoms with me, just like commenter SasF said they do.

I also always keep a sugary snack or a ginger biscuit for after fainting episodes, I find it helps to regulate my blood sugar and make me feel less dizzy. Not sure if that will work for everyone but that's what helps for me.

Fingers crossed you get a diagnosis soon and it helps you move forward!

[Lindle]

Do you get any leg pain and is your pain on one side more than the other?

[Emmaja_ne]

Thanks for replying everyone. I feel a bit relieved that I’m finally going for investigations. Also been referred for a pelvic ultrasound so not sure if this will show anything. My mum had a hysterectomy a few years ago and they found she has Adenomyosis. Is this hereditary? Hi lindle, the pain is usually more left sided but no leg pains at the moment. I’ve spoken to my GP yesterday and they’ve told me to go back on the pill again while I’m waiting to be seen. Do people think this is a good idea? Has it worked for them with the pain? I’m in constant fear of coming on my period because I know the pain is going to be unbearable. What pain relief do people use?

[R0zie in reply to Emmaja_ne]

I think it can be hereditary my doctor was asking me if anyone else in my family had endo… pain relief! I use naproxen and cocodamol , heat patches, hot water bottle, deep heat and recently got a tens machine which I’m finding really helpful. I found contraception made me so much worse. I have PMDD and felt the pill/implant etc made my mental health sky dive And didn’t find it helped with symptoms, however I know it works for some people maybe you could try it out for a couple of months and see how you feel! I gave the pill another go while waiting for my referral just to say I’d tried it. Xo

[Emmaja_ne]

Also, great idea about the emergency basket! I will definitely sort one of them out x

[R0zie]

Hello lovely! - I’m not diagnosed yet - like you I’ve been referred after months of back and forth with the gp - I’ve been waiting now for my hospital appointment almost 2 years. ovulation pain is defo way worse for me than period. I’d say I have lower back and pelvic pain almost every day too 🙃 I’m usually in bed with extreme fatigue and pain for a few days during ovulation. Hope this helps xo

[Emmaja_ne in reply to R0zie]

2 years?? That’s terrible! I don’t think I can cope with another 2 years of not knowing what’s going on. You must be feeling terrible. My gp did say they wait for gynae is long 😭 I’ve heard acupuncture is good, have you thought about trying/ or tried this?

[R0zie in reply to Emmaja_ne]

Urgh I know! It’s been awful like even if I had a date through id feel better because it’s some hope haha! This chat has been a great help though because loads of us are in a similar position so it’s nice to support each other & just have the chance to have a good moan with people who understand 😂 I’ve not tried acupuncture I’ll defo need to look into it … at this point I’m just used to plodding along in pain and having days of rest tho 😂 xo

[Dee_EndoUK Moderator Endometriosis UK]

Hi Emmaja_ne

A really warm welcome to the forum - I'm so pleased to see that several of our lovely community members have reached out to you already with help and support.

If you haven't already done so, it's well worth checking out our website, which is packed full of information that could help you on your endometriosis journey.

Along with our forum, we also have face-to-face support groups all over the UK where you can discuss endometriosis an the issues you are experiencing with other sufferers. You can find this at endometriosis-uk.org/find-a.... We also have an online support group too if there's not one in your area.

Take care - wishing you all the best x

[Sleepy_Leopard]

Hey, I’m fairly new also! Welcome I have symptoms everyday and they are worst for my ovulation and pms which last about a week. It seems that a condition like endometriosis only affecting people during their period is a bit of a misconception, as far as I’m aware! Same as you, ovulating is a massive trigger and my pain is excruciating also! Have you tried a tens machine for your lower back? It helps take the edge of a little for me! I also found hot baths, hot waterbottles and cycling help back pain. Hope this has helped you a bit xx