Endometriosis investigations

[bananaballet]

Hi I've just turned 22 and have been experiencing unbearable pain with sex for the last 6 months. I was referred to gynaecology who treated my cervical ectropion (I cried from the pain of the speculum) , however the consultant didn't think that was causing my pain and has referred me to the endometriosis clinic. I also had an ultrasound - I was told it was mainly to rule out PCOS and that didn't show up anything.

I hadn't considered that endometriosis could be a possibility - my periods are very regular; even now I have come off the pill. I have suffered with pretty bad cramps my whole life but they definitely haven't got worse. I do feel my stomach is larger and I have semi-recent stretch marks localised to that area but have just put this down to gaining weight.

Is there anyone else who hasn't 'ticked all of the boxes' for endometriosis but has been diagnosed?

What should I expect the next steps to be? (I'm in the UK so going through the NHS)

Thanks

[FrecklesandFlowers]

Hiya, I haven't been diagnosed yet but my gynaecologist believes I have endo - I'm on the waiting list for a laparoscopy. Like you my periods have always been regular but very painful. I've had an ultrasound which was clear. I have also cried from the pain of a speculum😩

I waited a year for an appointment with gynaecology. I was told to keep a diary of symptoms, food, bowel movements etc. I'd recommend doing this because you get a better sense of what's going on inside and it sometimes allows you to identify triggers for your symptoms. The doctors tend to hold a symptom diary in higher regard than you just listing off symptoms as well - it's a record of your experiences that doesn't rely on memory. There's loads of apps for this.

They will probably suggest going back on the pill or using some other hormone treatment tbh (unless you're trying to conceive). The theory is having fewer periods reduces the likelihood of endo tissue being able to grow (to be clear - it doesn't reduce endo growth, just reduces the chances of new growth). Talking from experience, having fewer periods has reduced most of my more severe problems (like period pain). I still have other symptoms (and side effects from the pill) but I'm not struggling to walk once a month like I used to yk. I'm also prescribed naproxen (anti-inflammatory) for my period pain. Might be worth asking the GP for pain relief?

[bananaballet in reply to FrecklesandFlowers]

Thank you for your reply! I'll start the diary - that's really interesting thank you

[velowatching]

Hello! I was diagnosed with endo by lap last year. I'd never had particularly heavy or painful periods. My pain when it started to develop didn't seem connected to my menstrual cycle at all, it's just near constant abdominal pain. So I don't really fit the stereotypical picture for endo but I do very much have it. Best of luck with figuring your situation out!

[bananaballet in reply to velowatching]

Thank you for your reply - it is nice to know that there are other people who have been in a similar situation

[BloomingMarvellous]

You don't have to tick all the boxes to have the problem. Issues can arise in number of combinations and accrue or worsen over time as the problem becomes entrenched. Pain isn't a reliable indicator of spread level either.

There are seemingly different types of Endo and for some women it spreads quickly others not. No golden rules around types either. It's a question of working out if it's Endo how it's affecting you. Regularity of periods isn't indicative of endo normally.

As you are scoping out on info for endo Endo UK have good online resources and nurses to discuss things with, also as a good background read is Heal Endo by Katie Edmonds with a broad approach to endo care .

Hope you get some answers soon

[bananaballet in reply to BloomingMarvellous]

Thank you for your reply and recommendations, I'll look into these

[SunflowerDandelion]

Hiya! I didn't hit all the boxes for endometriosis (my symptoms were intense cramping longest for up to 2 weeks - usually across all of my abdomen, fatigue, nausea, mood swings) and my endometriosis didn't show up on ultrasounds or MRIs but when I went for my laproscopy I was diagnosed with stage 2. So as others have said, it can be very different depending on multiple things like location of the tissue, how much etc.

In terms of next steps, definitely keep a diary - as others have suggested. I kept a log of my periods when, how heavy (before they stopped due to Cerazette) for a couple of years and then transitioned to tracking all of my symptoms. It can be really really helpful in case there are patterns. The other thing is if you haven't already had the conversation, ask if there are other forms of the pill/pain management options. If you do go down the endometriosis route, as well as the ultrasound you've done, you can also do an MRI to check. But unfortunately at the moment, if those don't show anything, the only way to know for sure is via a laparoscopy.

[bananaballet in reply to SunflowerDandelion]

Thank you for your reply, I think the symptom tracker is definitely something I will do. I think I will also just have to advocate for myself when I do eventually get an appointment at the clinic. Thanks!

[ElectricLight99]

I'm in a similar boat! I'm 26, just starting a (possible) Endometriosis journey! Had a gynecology appointment a few days ago, after waiting for 6 months. Dr thinking I have Endometriosis but now on a wait list for a laparoscopy to see. I feel like an imposter almost, as I feel like my symptoms aren't so 'classic' for the condition, and not as extreme as other ladies.

[bananaballet in reply to ElectricLight99]

Yes you're definitely not alone! I didn't answer yes to any of the other endometriosis symptoms questions the consultant asked but I am glad he still referred me anyway. Best of luck on your journey

[ElectricLight99 in reply to bananaballet]

Thank you, you too ✨️