Where next?

[nutellabunny]

This may be a little long, but if you're willing to read it I really appreciate it.

I'm 17 years old right now. I was "diagnosed" with endometriosis when I was 15. I put the quotations because they never actually did any sort of tests... I explained all of my symptoms and issues and it seemed like endometriosis was the only answer.

My periods are usually two weeks long minimum since I got my period when I was 11. My longest was when I was 16 which was just over a month. My gynaecologist put me on a few different birth controls until we found a good fit so I could skip my periods. Even though I'm doing what you're supposed to do to skip a period I still keep getting periods... in the middle of cycles, lasting for over two weeks just like before, very heavy, very painful.

It takes me a very long time to get an appointment with my gynaecologist. One night while I was sleeping I couldn't get up because I was in so much pain. I wear the heaviest pads I can buy to bed, sometimes even stacking them, and I bled through onto my bedsheets. My mum decided that heavy bleeding like that and the inability to get up meant I should go to the emergency even though it's happened before. I guess this time it was worse than usual, or maybe I just don't make it apparent enough when it happens. I don't really remember.

When I went to the hospital they told me they found a cyst on my ovary, but when I told the doctor it has happened before he told me that maybe this is just a common thing for me. He didn't really offer any advice or further precautions, nothing about the endometriosis journey I guess I'm on with my gynaecologist. He told me that I was too young to be diagnosed seriously and even though he thought it was endometriosis too that I should wait it out to see if I grow out of it since I'm a teenager.

Does anyone on here with endometriosis think that's what it is? I'm honestly still not sure. I get long, heavy periods. Sex is very painful. I can't wear tampons at all because they last maybe an hour maximum. I'm usually in a lot of pain near my ovaries quite regularly. The birth control isn't doing its job as far as I know, and my gynaecologist mentioned trying estrogen therapy.

Should I be seeing someone else about this? Was anyone else diagnosed with endometriosis with no tests? Should I be getting tested or something? I just sort of feel like I'm at a dead end. The birth control didn't work and it sounds like everyone on here has some sort of surgery to handle their endometriosis and I haven't even been told about anything like that. Help!! Help!! Where do I go from here?!

[Hidden]

I was "diagnosed" at 19 without any tests after 6 years of pain, heavy periods and painful sex. Since cutting out certain foods and going on the lower pill it's increased, so they're still debating if that's what it is. I know it's a ballache trying to get a lap but I'd go to the gyneao with a list of questions that you have ( I was refused a lap til I want to start having kids as an 'internal scan showed my ovaries were clear, but might be worth seeing about one of those or an ultrasound just to be clear even though they are pretty useless!). Also I have vaginismus which makes sex painful, and could be worth a look in to! x

[Shelly92]

Oh yes yes yes.

You need another doctor a specialist that deals with endo every day .

Estrogen Thearapy to me sounds counterproductive.

It may make endo grow faster .

The pill did stop my periods and for the first time in a long time I started to breathe again .

The dr who said you were to young to get a serious diagnosis was a lazy dr who didn't want to do the work .

I swear some of these doctors ...

Wonder

If they had a condition in which their penis swelled up , bled , pain during sex and started to turn black

Would one say?

Be patient and let's wait and see what happens ?

It's sad that this disease was not one that struck mostly men and most especially men in the field of medicine .

It would have been dealt with and be over for sure .

Easy to say

Let s wait and see....

Feel like replying

Really and how many people are in this (let's) part , because as far as I can tell the only one painfully waiting is me .

[JenH]

It does sound like endo but like you say they need to be doing something to help you with the pain not just waiting... I would go back to your gp and ask to be referred to a BSGE centre. These are the Doctors that are educated on how to treat Endo as I think a regular gynaecologist just does not have enough experience or understanding of endo it correctly advise you of what to do.

You are young and so I can understand they don't want to operate as that can cause scar tissue which makes the endo worse latter on and you obviously have many years ahead of you, but just waiting and leaving you in pain is not a good enough alternative!

I hope you get some help with this. x

[Lou7707]

Hi Nutellabunny

Below is some information about getting diagnosed with endometriosis that I hope you will find useful. If you need to talk to someone or have any further questions we have a team of volunteers on our helpline who will be happy to help you. See our schedule for when someone is available.

endometriosis-uk.org/sites/...

endometriosis-uk.org/suppor...

Best of luck

Louise

Endometriosis UK

[katmccorm]

Hi Nutellabunny.

So sorry to hear about your experience. Truly awful.

At around the age of 20, I started having periods similar to yours, bleeding for weeks, waking up with the bed covered in blood, it would be running down my legs as I ran to the bathroom. I have had all the symptoms of endometriosis since this time but was constantly told it can't be endometriosis, you're too young, it starts at 25- I was even told this when I had my first laparoscopy at 24?!??! I would collapse on the floor in so much pain I couldn't get back up again.

I really, really had to push and demand to be taken seriously, was consistently told it was probably a sexually transmitted disease, awfully degrading.

I found that progesterone only contraception (if that's what you are on?) makes me periods heavier, the combined pill makes them a bit lighter for me, but I've also been told I now have retrograde menstruation which makes the bleeding lighter apparently.

Anyway, I just want you to know that you're not alone and to keep fighting, don't let any doctors fob you off because you're young. I'm now 29 and have only been diagnosed a year ago, and am not treated much better by doctors now to be honest.

Shelley, I definitely agree with you, I'm always saying if men had endo it would have been cured by now! I was even asked 'do you understand how the menstrual cycle works?' By a male Doctor when I asked what retrograde menstruation was 😡😡😡

Also, have you ever considered using reusable menstrual products? They can really help with heavy bleeding and have heard a lot of endo suffering ladies have seen much lighter, shorter periods after using these, myself included.

Good luck, I hope you get some answers soon xx

[nutellabunny in reply to katmccorm]

Thank you so much for the reply! I have an appointment soon so I'm going to really push like you did so I'll be taken seriously. I've been told I'm too young many times but I'm never heard that it starts at 25. No wonder they don't listen, they think I'm 8 years too early for this, I guess? Ha. I'm not sure what you mean by reusable menstrual products? Do you mean that menstrual cup or like those thick period panties? I would love for a lighter flow.

Thank you! Good luck going forward to you as well xx

[katmccorm in reply to nutellabunny]

You're very welcome,

Good girl, it is so hard, but you know your own body better than anyone else. They are terrible, I had my first laparoscopy at 24, I didn't see a gyne until I was 22 as my GP refused to refer me! I was 20 when I first went to the doctor about my periods. I had more STI tests than I could count, every doctor I saw did one, even though I was in a relationship with the same person throughout this whole time, they assured me it was standard practice, not because I was young, however, since I turned about 27, they haven't even suggested giving me one! 😡

I remember wanting a smear test for piece of mind at 24 and they refused, I just went to reception at my doctors after an appointment and said that the doctor had told me I need to have one right away and wouldn't leave until they fit me in 🙈

Sorry I didn't explain better, yes I mean menstrual cups, I started off with a menstrual cup and also have some reusuable cloth pads and even a sea sponge tampon now. Check out 'precious stars pads' on YouTube, she is brilliant, so helpful and knows what she's talking about, I watched so many of her videos and bought my cup and pads from her website. 'It's just Kelli' on YouTube is also great, she has been using a different product every month and reviewing it , she shows all the gory details, even the cup filled with blood to show what it's like, and she has endo too!

Also, it can help if you take someone to your appointment with you, maybe your mum? I started to take my boyfriend with me as I'd get so upset, and he had been through it all with me. Also, I had a laparoscopy cancelled on the day this Tuesday just gone, which I was so angry and upset about, they gave me a date of 28th Feb for the next surgery and assured me that was the earliest they could fit me in, my mum demanded to speak to the surgeon to tell him off and they moved it forward 2 weeks to the 14th, so having an angry, worried mum with you can definitely get results! 😂

Keep us updated with how you get on, lots of luck 😘 Xxx