Endo Scan and Ectropion

[Delilah-Luna]

I went to the doctor a few weeks ago after having periods that are lasting about 10 days to two weeks at a time, I have horrendous period pain that has been getting worse over the last few months, I’ve been feeling sick and dizzy with it, also having leg and back pain. She took a swab (which was so painful I was nearly in tears) and she did an internal - I honestly thought she’d just feel my tummy and tell me nothing was wrong lol. Anyway she could feel a cervical ectropion so I need to have that cauterised. But she has also referred me for a scan for endometriosis. So now I’m on a waiting list for all that.

The more I look into endometriosis, the more I can’t believe how many of the symptoms I have. One really strange thing that I’ve had for years is burning hot feet at night, it’s recently got so severe, I can’t sleep, my legs feel numb and achy, my feet feel so prickly and hot every single night. I was wondering if this could be another symptom, or if anyone has anything similar. I’ve tried looking it up but I can’t really find an exact match of what it feels like.

I’m a bit worried that I’ll be forgotten about as I haven’t heard anything about my referral just yet but I do understand how busy they are.

[CryBaby91]

Hi Delilah

Getting diagnosed can be a long road sadly, we don't get the care we deserve and get dismissed A LOT.

Is a proper specialist doing a scan? If not then please don't be upset if this scan comes back "clear", all of mine did and my first gynae suggested it was all in my head because of the clear scan. However my lap discovered significant endo on both ovaries and my uterus fused to my stomach, so yeah, clear scan means nada when it is in the hands of a person who does not specialise in endometriosis. Please don't allow them to make you feel crazy, those symptoms absolutely fit endo and you have every right to be seen and treated.

If you have Facebook there's a group called Nancy's Nook, it's genuinely full of lovely people who have so much information, one lady is a retired nurse, she has helped me so much (on twitter I sadly don't have fb) it is honestly unbelievable. Get yourself surrounded by people who support you and will help arm you with good reliable information! If you walk into appointments knowing what needs to be done it is easier to bat off gaslighting from doctors. I wish I could say that you'll be definitely sorted out, but so many of us get ignored it's ridiculous.

Regarding the pain down your legs and the tingling in your feet, yes I get that too. You're not crazy! Xxx

[Delilah-Luna in reply to CryBaby91]

Hi there, thank you so much for replying, it’s so kind of you. The doctor actually told me that sometimes nothing comes up on the scan but she feels it’s still worth doing it. I’m seeing a gynaecologist about the ectropion but I’m not sure about the scan, tbh it all blurred into one and was a lot of information to take in, I wasn’t even going to go to the appointment because I thought I was wasting their time but I’m glad I did go.

Thank you so much for the advice, I will have a look at the Facebook group. For the meantime they put me on the pill so I don’t have a period. It’s a bit too early to say if it’s helping, I’m still getting symptoms as if i am on my period.

I hope you’re doing okay, and thank you again xxxx

[CryBaby91 in reply to Delilah-Luna]

You're absolutely NOT wasting their time, those symptoms are not normal and any decent gynae will agree that it has to be fully investigated. Though you will likely have one say to you that it's not endo, just hold your nerve and be strong. I had my first gynae say it couldn't be endo, he was wrong.

Yeah contraception can help with the issues directly linked to your period, but if you have pain outside of your period it won't do much (if anything, it didn't in my case). Please also keep in mind that contraception does not treat endo, it only masks symptoms. So anything going on inside will still be happening, you just may not notice it. I was on contraception on and off for around 16 years, still had issues with my lower back and legs sadly. It just hid what was really going on lol it wasn't until my husband had a vasectomy that everything became really obvious.

Don't get me wrong scans can be useful! They can find cysts easily, because they are filled with fluod so are more easy to see on the screen. Endo however looks flat and had many colours and shades to it. Imagine it like a bit of cling film, sticking itself to surfaces and laying over the top. Endo is a bit like that in a way. It's also very much like a dandelion plant, if the surgeon goes round with his weed whacker and burns or cuts the top off only, you'll find it spring back up again quick. If he is good at his job and knows his stuff, he will rip that evil little plant out by it's roots and try prevent it growing back. This absolutely isn't guaranteed, like the dandelion endo is so pervasive and persistent, it can grow back again and again. I wish I had known this at the start, I thought I would have surgery and get my life back. Or I thought I could have a hysterectomy and be fine. It just isn't that simple. But this community is amazing, and having my endo family is genuinely a life line.

Are you keeping yourself comfortable in the mean time while you wait to see what the scans say and what the gynae plans to do? On decent pain relief? Do you use hot water bottles, plug in heated pads etc? Honestly I'm here to chat any time, just bob me a private message or post on here, I generally keep an eye on here every few days unless I'm talking to someone already lol. I'm also on Twitter and Insta, happy to connect if you need an endo buddy xxxxxx