An aspect of the importance of a diagnosis I feel is overlooked

[Endo101]

As we all know, endometriosis is something that is more often not taken seriously, as is highlighted by its 7.5 year average diagnosis time. Of course, most importantly doctors should be taking women’s symptoms seriously as with a diagnosis, people will get access to more appropriate treatments and the psychological benefits of having an understanding of the condition cannot be overstated. However, something I feel that is always neglected is that whilst yes there is no cure, it is important for people to know they have it or at least that there is a possibility they have it rather than being told their pain is normal because it is common now for people to delay having children until their 30s and 40s these days. If people are aware from an earlier age, at least they can make an informed decision as to whether they want to have start having children early on to improve their chances. For me, that was a major reason I wanted to find out. Letting people go away from appointments thinking their symptoms are normal when they aren’t can therefore be of great harm later on.

[Afrohair]

I agree their needs to be more awareness!but after speaking to a few people on here not everyone wants to try for a baby early on regardless of their condition . the other day I spotted a young lady age 31 on here she had already been told to try for a baby because of endo but was still against trying as she said she wasn’t ready .just to say people don’t want to feel like the choice is taken from them which can lead to consequences which I tried to point out that professionals say this for the best and I didn’t get a good reaction saying .so it’s hard for people !I think 31 is a good age to have children but feel sorry for those just left school and they are saying it.im 34 luckily I have children but was planning for another when I found out I have endo this sadly ended in misscarrige but I will keep trying I won’t wait any longer now.

[Endo101 in reply to Afrohair]

Yeah of course you may not be in a position to financially or mentally in your early or mid-twenties anyway but at least you have the option to make an informed decision. If you don’t know at all or leave appointments believing you are fine because that’s what you keep being told and you delay it until your 30s, find out you can’t have children, I think it would (at least for me anyway) lead to a lot of regret and distress.

[Endo101 in reply to Endo101]

Unfortunately as it turns out I’m not financially in a position to have children at this age anyway but if it weren’t for that, with the knowledge I have this condition, for me personally, I would’ve wanted to be trying now. If I hadn’t received a diagnosis, that’s not something I would naturally consider even if I were in a position to. A diagnosis at least gave me the option to weigh up the situation.

[Afrohair in reply to Endo101]

I understand what you are saying !i had to research it all myself I was never told anything.for me I don’t think there is ever really a right time life Dosent always go to plan and if you plan it still Dosent always go how you want but that may be just my experiences. I planned to work my way up before my next baby then endo hit me and I’ve had to step down it got so bad I couldn’t walk so my job is neither here or their and I’ve got no new baby which I planned because sadly I lost her.but if I knew I would of tried for a baby earlier and not gone after my career x

[LeahEndoUK Moderator]

Hi Endo101,

Time to diagnosis is one of the major battles for endometriosis, due to the invasive laparoscopy this often contributes to the delay, however much research is being done to try and overcome this!

Awareness is definitely a major role in women being able to recognise their symptoms. Menstrual well-being is now being introduced in to schools, which will hopefully help younger women identify if something is wrong and have the confidence to talk about it!

endometriosis-uk.org/news/m...

Best wishes,

Leah

EndoUK

[Moon_maiden]

From personal experience I would second that. Get things checked out with a consultant who knows what they are talking about, as soon as you can, don’t let dr’s put you off at all with the ‘normal’ routine. This includes whether you want children or not.

I don’t know the full extent of my endo yet, if it’s deep, or it could possibly be something else as well, haven’t had all tests yet.

[NH88]

You have hit the very important nail on its head.

Regardless of if a woman wishes to have children or not, being able to know what is happening with your own body is extremely important.

Noone should be told that they must "put up with it" because it is "normal" or that "even if we find you have it we cant do anything about it". Noone should be told "thats why its called period PAIN" or even "its all in your head"

That is very belittling to women who are suffering without knowing why.

Noone should be ignored.

Noone should be made to feel small or that their health problems are so insignificant that they dont need to be investigated.

[Anastasia17]

I agree with you Endo101 that women should be informed by medical professionals. Unfortunately, I have experienced the other aspect which is that GPs know what the woman has and is going through, but, like in my case, they chose not to inform their patient because it would cost them money. This is the game that my GPs have played with my health and I know that I am not the only one. When a GP and a nurse practitioner both tell you in your face when you are in pain in front of them that 'for endometriosis, NOTHING CAN BE DONE, for interstitial cystitis, NOTHING CAN BE DONE'. In my view as a patient who was asking for help, it says it all about the GP. They DON'T WANT TO DEAL WITH IT and they made it perfectly clear to me 15 months ago. I am shocked by not only by their attitude, but also by the fact that the NHS protects them to hurt their patients. Yes, awareness of young girls is the way forward, but what about education of medical students about endo, hormonal imbalance ? Ad, from what I understand, it is optional at medical schools /unis. And then they are considered as being 'qualified'. The life of 56.1%of the population (i. E the majority of the population) is between their hands, but they have no training to cure/help the majority of the population.

I also would like to confirm that, from my own experience, they laugh at women and our so-called 'problems' (to them).

So, we need to educate medical students and make women's healthcare 50%of their training.

We also could ask them to change their 'I know it all' attitude, that causes so much damage to patients.

Education and empowerment of women, yes.

But education of GPs, yes too!

[Noodle31]

I agree. I have only just been diagnosed, in January this year after an ultrasound found two large cysts on both ovaries. I was only there because I had found a lump, and due to covid I am still waiting on surgery.

I'm 31. Always wanted children. Plan to freeze eggs as soon as possible post op. And I was always told my heavy periods and pain (even vomiting) was normal. In the end I developed coping strategies, which at around 30 seemed to be working - but clearly I was wrong. I am actually very angry that I wasn't diagnosed earlier, instead of being left until I had stage 4 endo (as is suspected). I spend a lot of time these days wishing I could have a time machine and shake my younger self into being more insistent with doctors.

[AnnieAnnie]

What I've found frustrating is going to various GPs over my lifetime and explaining I have excruciating period pains and bleed really heavy yet I am the one who has to put all of my symptoms together (it has taken me years to do this and until around 7 years ago I had never heard of endometriosis). I'm the one asking my GP and fertility specialists questions and putting together all of my symptoms when it should be the health professionals diagnosing me. For 24 years I've been told I just have painful periods. 3 ivf cycles in and still no further forward and still in so much agony I literally beg my GP for a referral and my scan with a stand in sonographer on holiday in the UK from Australia immediately sees signs together with my explanation of my symptoms says she sees signs of adenomyosis (which can only be diagnosed via hysterectomy). Again, I had never heard of it until this scan. It is like no one cares about the pain woman are in. Even asking the various fertility specialists whether my painful periods could be caused by endometriosis, and each one telling me no and brushing it off just to get me in. The amount of scans I've had and no one picked up my adenomyosis! We are being let down by medical professionals, being brushed off and made to feel like we are wasting their time. Made to feel like we are whinging about something that "all woman go through" (yep I've been told that), that it's all in our heads and told that we have to deal with it. Doctors definitely need better education and so do young girls. I for one would have definitely been looking into preserving my fertility at a younger age if I would have been diagnosed earlier. As it is I've wasted 3 ivf cycles and still don't have a diagnosis and am still pushing for a laparoscopy to find out whether or not I also have endometriosis. GPs need better understanding and need to take us serious.