New to the forum

[hhughes]

Hi ladies,

Quick introduction - my name is Hannah, I'm 27 years old and I've been officially diagnosed with endometriosis for 5 years (unofficially I struggled to get a diagnosis for quite a bit longer). I'm a little tired of women's health being a bit of a taboo subject between people and so have jointed a couple of forums for a bit of research and am going to be starting a blog of my own, sharing my experience, knowledge and worries as well as the experience of others. I'm sure I'm not alone in my experience of having people almost look down on you because they think you simply can't deal with the pain of a period.

My aim for the blog is to raise awareness on endo. I don't expect to make a huge difference but every droplet causes a ripple, and selfishly it's going to be my place to rant. My first port of call is you guys. I want your opinions (if you are willing to provide them) on the idea of blog. I'm aware it's not the first of it's kind, but I would quite like to include other peoples views and in the long run give them a podium to tell their own story.

Hannah x

[Life-with-endo]

Hi Hannah,

I know how you feel, I've been officially diognosed with endometriosis for 6 month unofficially I was struggling for two years

Same situation,every time period was the first reason for my pain, mood, exessive tiredness,in everyone's eyes, and it was difficult to live with it. Knowing that practically everyone thought that I am just week women who lacks the attention.

And worst thing is that now when I have been offiacially diagnosed with it, people still don't get the struggle, physical and mostly emotional struggle that comes with endo

I think that main issue is that people are not enough familiar with this disease and and they can't understood how it affects women's life in every single aspect of it

Sometimes I do feel like I am on my own

[hhughes in reply to Life-with-endo]

Thank you for the reply!

You're final sentence just makes me so sad, because that's absolutely how I have felt in the past and how I'm sure so many endo sufferers feel. My aim for my blog is to reach out to people like yourself so you don't feel so alone. It's hopefully something you can share with friends and family so that they understand you that little bit better.

[nicole_44]

Hey Hannah.

I think doing a blog is a really good idea! Not only for yourself as a place to rant and vent but also to raise awareness of the condition. From my own experience awareness needs raising to reduce how women are left to feel during diagnosis. I am currently waiting for a diagnosis and i feel that the lack of awareness makes you feel like your pain and symptoms are completely in your head.

Nobody really seems to get it or understand- not even doctors!! You're left doubting yourself and almost feeling insane! I think more understanding and awareness is the only way forward for women to feel that they can speak about their pain without the worry of not been understood or left to feel that it is all in their heads! It has been a really off putting journey for me and at times I thought id be better off to live in pain than be told by anybody else that 'everyone gets period pain'. I almost decided not to go ahead with a laparoscopy purely due to the embarrassment of nothing been wrong with me.

Its tough enough to live with the pain and other symptoms without having to prove to your family, friends, work place and doctors that you are actually ill!!

Awareness is the only way forward in my eyes- diagnosis is a horrid process, or has been for me.

Good luck and hope you're doing well!!

xxxx

[hhughes in reply to nicole_44]

I had to fight for my diagnosis back in 2012. I knew that something was not right in my body but I had a horrendous time trying to get people to listen to me, at times convincing myself that maybe I was being over dramatic and my pain tolerance was just a lot lower than all my friends and family.

But, putting the physical symptoms to one side, mentally it has had such a huge effect on me. Again my hope for this blog is to ease the minds of other sufferers, give them something they can show to friends and family to raise a little awareness and have people understand just what they are suffering through.

The blog is still early days, I've just about written my first draft of my opening post, but watch this space if you want a read of it.

x

[nicole_44 in reply to hhughes]

I completley agree!

Will keep a look out for it- Good luck :)x

[Hidden]

I've read a lot online about other people's experiences since I was diagnosed and it has definitely helped me feel less alone - I've also found lots of very helpful information. I think a blog is a great idea and I would definitely read it xxx

[Hidden]

Hey Hannah, my names Hannah too😂

Anyway I'm 17 and ahwv had probable endo for about 10 years, I had a really early periods and my doctor never thought anything about it even though every time I got it I had diarrhea. They didn't get painful till last February and then I was put on the pill, then referred to a gyno and told about endo, over the next few months the pain became chronic, and it spread from my abdomen to my kidney to my chest. I'm on two progesterone pills now and awaiting a laparoscopy. I'm also in Pelvic Floor physiotherpy which is where I've been told the area that bloats on one side of my abdomen is my Fallopian tube and it's the reason I'm in pain, I've also been told my tailbone is lumpy if felt through my vaginal canal.

I also developed an allergy to all sanitary napkins in the past year so I've switched over to cloth pads, my allergy symptoms are burning and itching that only goes down with bendaryl and sitz soaks and oatmeal.

[JRae91]

This is a fantastic idea, just started following similar blogs and although they are all great so far, they seem to be few. Am starting a lifestyle blog soon myself and have been toying with the idea of discussing endo and mental health on it. So glad you're doing this! Endo awareness is alarmingly scarce, especially given the number of women it affects on a daily basis. There are so many stigmas attached, including those often associated with mental health due to depression and anxiety being common symptoms of endometriosis. Health of any kind is a topic that should be (emotionally) safe to discuss.

Please let me know if you need anything, would love to share my story or provide support as you proceed on this endeavor

[chloe3011]

YES YES YES! That's a fantastic idea, it's all about raising awareness and educating the world. I sound like a broken record but after 10 years I've now been diagnosed, I just want to tell everyone suffering that youre not alone and we all deserve to be given the right treatment x