I'm new here

[cbradbury]

Hi everyone,

I'm so glad I came across this page as I feel reassured and more educated already. I went on the pill at 15, to stop my extremely heavy and painful periods and since then everything was fine - periods were regular, a normal amount of pain etc.

A year ago, at 22, I decided I no longer wanted unnecessary hormones in my body. I came off the pill and went onto to non-hormonal / copper coil. 3 months later, once the pill (Rigevidon) was out of my system, I began getting sharp and dull pains in my ovaries for around a week at a time. I was told it was painful ovulation and provided anti-biotics, which did nothing.

After researching, I found out about endo and have been pushing to get a referral since. I've had swabs, bloods and I've got an ultrasound on Monday - but I'm worrying even with this nothing may show up and I'll be sent away as if nothing wrong? My main concern is becoming infertile in the future, if nothing shows up now and there is something going on which is going to get progressively worse over time. I feel really anxious about the uncertainty.

Any advice would be massively appreciated.

Thanks so much,

Char x

[Moon_maiden]

Hi

I’ve found the forum really helpful, my reply is mainly to say hi, despite my years I’ve not had much to do with the pill, never wanted it.

Don’t be surprised if Endo doesn’t show on an ultrasound, it definitely shouldn’t be the end, only the beginning 🙂 you need to have a lot of experience to see it on an ultrasound but will rule out other things. Same with bloods. It’s still important to do these and they have specific guidelines to go by. Regardless of any of this you need the referral to a Gynae. I tend to tell people to fill in the econsult form, tell them (nicely if you can, I’ve struggled with that part at times 🤣) this way it’s in writing and can’t be ignored or lost. It’s far harder for them to say no as it would need justification.

Hope all that makes sense

[Hidden in reply to Moon_maiden]

Weirdly mine was only seen on the internal ultrasound because it was hiding. There are treatments for infertility but not everyone gets that or has problems with that. I can't help on the pill as due to family history I'm not allowed hormones due to other risk factors.

[Moon_maiden in reply to Hidden]

Hi, not sure reply was meant for me, but wow, the fact they saw it was great they knew what to look for. Hope you’re keeping ok 🙂

[cbradbury in reply to Moon_maiden]

Hey!

Thanks so much for your reply, I hope you're doing okay? Please can I ask what an econsult form is, is this something to fill in before I see them, or is it something they will give me?

Thank you,

Char x

[Moon_maiden in reply to cbradbury]

HiThe econsult is a form on the GP practice website, it’s an alternative method to contacting the GP but leaves an audit trail. The form might be called something else on yours, it’ll be there. My surgery prefer patients to use it. It tends to only be available during surgery hours, used to be able to fill it in out of hours, that changed during covid.

I hope this helps.

I’m waiting on a third op on the 15 of covid doesn’t get in the way.

[Baobun17]

Hi char,

I don't want to alarm you but I was similar.. on the pill from 16 to 29, came off and within 6 months had severe pain but was just considered as period pain. I was only taken seriously when I was trying to conceive at 30 which by then was too late as you still have to wait a year before they do more investigations.. I got diagnosed with severe endo at 32, had multiple surgeries and 4 rounds of failed fertilty and im pretty much infertile now, multiple organs removed and diminished ovarian reserve.

My advice is get your referral to gynea and push for an MRI. It was the MRI which relieved it. And don't give up whilst your young and have a chance to save your fertility xx

[cbradbury]

Hey!

Thank you so much for the message. I'm so sorry to hear about your journey, I hope you've found some peace in your situation and if you ever want someone to chat to don't hesitate to message me.

In terms of being referred to a gynea, after I've had my ultrasound - if they tell me nothings wrong, do I just demand (in the nicest way) to be referred to a gynea because I know something's wrong?

Thanks again,

Char x

[Dee_EndoUK Moderator Endometriosis UK]

Hi Char

First of all a really warm welcome to the forum - it's lovely to see that so many people have reached out to you already! An ultrasound is a really good first step - don't be afraid to ask as many questions as you need to, especially regarding possible next steps. A laparoscopy really is the gold standard for diagnosing endometriosis and can also be used to treat endometriosis.

If you haven't done so already, please take a look at our website endometriosis-uk.org. It contains loads of information about endometriosis diagnosis, treatment and pain relief.

As well as our forum we also have face-to-face support groups all over the UK, where you can discuss endometriosis and the issues you are facing with other sufferers. To see if there's one in your area, just visit endometriosis-uk.org/find-a.... If not, we do have an online support group too.

Hope this all helps - very best of luck in getting a diagnosis x

[Amy8970]

Hi lovely, this sounds so similar to me! I came off the pill in January 2020 to give my body a break as I had been on it since aged 15/16. I started noticing leg cramps/pain and over time they have been getting progressively worse. I started recording them after googling what this could be and Endo was mentioned. I noticed it occurred around ovulation and the lead up to my period but my periods are always pretty ok and not too heavy/painful. I’m now struggling a lot with the leg pain and lower back pain. I’ve had an ultrasound which came back clear as GP suggested I may have a cyst. I’ve now been referred for physio for possible sciatica and if no improvement then I will be sent for an MRI which I am going to push for. I am 26 and my main concern is fertility too especially if things get overlooked and it’s left to progress x

[cbradbury]

Hey Amy,

This literally sounds so familiar to me, minus the leg pain, although I have experienced shooting in my back, and my periods are pretty bad (but not debilitating).

Oh bless you - keep pushing for the MRI, I'm going to do the same despite the result of my ultrasound. Absolutely, I'm in the same boat. Can't believe the lack of medical support x