Feeling lost

[Amy8970]

Hi everyone, I had a GP telephone appointment last week as I’ve been suffering really bad with lower back pain and leg pain which is mainly on my left side. It started when I came off birth control nearly 2 years ago and I’ve noticed as time has gone on it was initially around ovulation and the lead up to my period starting but now it’s turning into a regular occurrence and is just worse around those times. I had a GP appointment towards the end of last year about it and the GP was really nice and said I might have a cyst so send me for an ultrasound which came back negative. I have moved house so had to move GP surgeries and the new GP told me it didn’t sound like it was linked to my cycle seems I am in nearly daily pain and that I have sciatica. I really feel like I’m being fobbed off and being referred for physiotherapy and an MRI scan may be needed if things don’t improve. Has anyone else been through this or is in a similar situation? My only symptoms are lower back pain and leg pain 😣

[RachaelNicole]

Before I had the severe pain when I was on my periods and around a year before I was referred to a gynaecologist. I was advised the pain in my back was sciatica as well. But looking back at it now I think it was related.

[Amy8970 in reply to RachaelNicole]

Was your sciatica worse around ovulation/period? I feel like I’m going out of my mind as I’m convinced the sciatica is linked but seems I don’t have any other symptoms it’s so difficult.

[Moon_maiden]

HiMy pain is everyday, the GP hasn't got a clue about what can happen. In 2019 I went back and forth so many times, I'm persistent at times 😂 not always a good thing, but has to be done. I was diagnosed with Endo after paying to see a Gynae as I'd had enough and wanted to see someone with a clean slate and prove them wrong and there was something going on. To be honest it was more to do with the fibroids on an ultrasound, hadn't really thought about Endo at that point, but always suffered bad periods.

There is lots out there on Sciatic endo problems. I've read a story recently on a pain mangement website of a woman that had this.

Do you get more pain happening on a period, or any bowel/bladder issues?

If you're keeping a pain diary have this to hand when you see GP and tell them you want a gyane referral and an MRI. Don't ask for one, tell them, nicely. Your surgery website should have an econsult form, use this as there is a section for requesting a referral. It's much harder for them to refuse and you deserve to know what's going on. It might not be Endo but you need to find out what is going on.

[Amy8970 in reply to Moon_maiden]

Thank you for your reply! I am going to start writing detailed notes on my pain then I can present this to my GP! I don’t have any other pain other than lower back pain and leg pain which is worse in the lead up to ovulation and lead up to my period

[Moon_maiden in reply to Amy8970]

Let us know how it goes getting the referral. You’ll manage it 😀

[CatherineEndo Moderator Moderator Endometriosis UK]

Hi Amy8970,

A pain and symptoms diary may help to get your issues across to your doctors.

The Endometriosis-UK website has some information that you may find useful and a symptoms diary that you can download here: endometriosis-uk.org/visiti....

Remember that you are entitled to a second opinion and that although it can be frustrating, it may be beneficial to rule anything else out first as the laparoscopy is quite invasive.

I hope you find the answers you need and the right care.

[Amy8970 in reply to CatherineEndo]

Thank you for your reply, I will have a look at this!

[lilp1984]

I've been backwards and forwards to the doctors for years with pain they just give me painkillers I now have a numb thigh and leg weakness on my left side as well as pain in my hips, pelvis and lower back one gp was going to send me to a neurologist to see if its nerve damage then the next gp told me to do yoga and wouldn't refer me. I hate going to the gp now because they don't take you seriously

[Amy8970 in reply to lilp1984]

Me too, it’s really put me off contacting the GP again 😣 is yours worse around your periods or ovulation?

[Moon_maiden in reply to lilp1984]

HiI was reading your reply. You deserve to be taken seriously, really should go back to GP. The econsult forms are really useful for this. You can also ask for a specific dr to look at it and contact you.

I didn’t do anything about bad periods, pain etc and now really regretting it.

Trying writing down symptoms, links with doing tasks etc., it really helps with putting a perspective on the whole thing.

You’re entitled to a referral, you pay for the service, it’s not free, I’m sure they twist things to get us to think it is. Sorry soap box moment 😂

[guillemot]

Hi Amy,

Just wanted to say that I also started out with back pain that gradually got worse over months and then started going down my leg too, and similarly was worse around ovulation and really bad during my period.

I know it's nerve related in my leg as I got a really painful sharp tearing/burning feeling shoot down my leg out of the blue one day, which persisted ever since.

Initially I was sent to a rheumatologist and told to do physiotherapy which made it worse, and then I saw a different doctor who told me it may be endometriosis. Really just wanted to emphasise that having daily pain in your back and down a leg can be a symptom of endometriosis too, because I didn't think it was related for a long while 😊

I've recently started amytriptyline to help with chronic pain and nerve pain. There's some useful information about management of pain on the Edinburgh Exxpect site: ed.ac.uk/centre-reproductiv...,

and I also found these videos really informative and helpful: endoactive.org.au/free-videos/

😊 Hope this is helpful!

[Amy8970 in reply to guillemot]

Hello! Thank you so much for your reply! Yeah this really sounds like what I am experiencing, it is so uncomfortable! Do you mind me asking how you got diagnosed and how long it took? Have you had surgery for this? Thanks, Amy.

[guillemot in reply to Amy8970]

No worries! 😊 Sorry if this is a bit waffly haha, hope it makes sense!

I originally went to see the doctor for low back pain in early 2020 (my period pain was also getting steadily more painful, but I didn't think the daily back pain was connected at the time). The doctor didn't suggest endometriosis as a possibility until about a year and a half later by which point I was struggling with very severe daily back and leg pain, and my period was unbearable. I saw the gynaecologist about 3 months after that.

But the timing was really bad with the beginning of the pandemic so that definitely slowed things down for me, hopefully this won't be the same for you! 😊

The gynaecologist also suspects endometriosis but the only way to definitely diagnose it is a laparoscopy, and the first line of treatment for endometriosis seems to be to try less invasive management first such as hormone treatment. So they suggested trying this for 6 months, which if it hasn't improved by then/worsens significantly in between then they will go ahead with surgery. They also wanted to do another ultrasound scan which I've just had done, so it's good that you've had a scan done already to rule other things out. 😊

Definitely helpful to keep a pain diary to present your symptoms to a GP, if the new one isn't very helpful maybe try and see a different one if you are able? The diary linked above by the endometriosis uk team is really helpful, and there's a lot of other info on their site too. There are also pain management teams you can be referred to if you are struggling with chronic pain, so might be worth asking about this too.

I hope you're able to get a referral and get some help 😊

Always happy to chat anytime! 😊