Is being young a reason so many of us are waiting years?

[Overthisbs_]

Heyy everyone, before I get into it all I just wanted to say how greatful I am to be apart of a community of people that get it. I only signed up a couple of days ago and so far have had more information on managing pain than I ever got from the professionals so thank you 🧡

I am one week post opp after having a laparoscopy and a hysteroscopy and all though feeling pretty rough at the moment, I finally got my diagnoses of Endometriosis, Adenomyosis and PCO. Whilst i’m ridiculously grateful for the amazing specialist and nurses that have looked after me I have a really irking (quite frankly disturbing) feeling about my experience as a whole :

-on serval occasion I went to a&e whilst waiting for my gyno appoiment due to the pain and was told “all women get pain you get used to it as you get older” “once you’ve had kids you will know what pain is” “your quite small, have you thought about building your core muscles to help with cramps” “have you tried ginger tea or biscuits” (seriously wtf!? These are the exact words of different medical professionals)

On the day of my laparoscopy, the Dr spoke to me and asked me to also consent to a hysteroscopy, which I did. I was initially meant to go in at 12, at 5pm I was still sitting in a gown in a chair in those pre-surgery cubicles. Two more mature women had come in since the dr had been to see me and both of their ops had been moved in front of mine... by 5 I asked for an explanation and was told due to my “age and weight and the scans not showing anything I should be able to still recover and go home tonight that’s why they have had to change the order of opps as the other women need to be monitored for longer to ensure you can all go home tonight”

Anyways 3 hours later I came out from surgery to be told I had endo in 6 places and they could only remove 4 the endo they couldn’t remove was stage 4 and much tougher (mostly around my rectum, which I didn’t even know was possible) so would need an all together different and more invasive op. They also burst an artery in the surgery due to pushing a needle deep through my belly button it hit the main artery at the base of my spine and caused a blood clot. When I came round from surgery just before 8pm the Dr explained the complications and that I would have to stay over night to be monitored. She also told me that I could eat until the dr coming on shit had a chance to check ... I didn’t eat until 12:30am at night as that’s when the dr finally got round to me.

The next morning the Dr told me how I was lucky to get my diagnoses in under two years (let’s just say I’ve been relentless; calling gp everyone morning, tweeting pals services, writing letters to dispute the wording on my medical notes) I was kinda knocked by this, I explained to her up until “according to her and her team yesterday I was low risk, you assumed there would potentially be some superficial stuff but nothing like the women you put in front of me and confident that due my age I would spring out of here but now I’ve been here over night I have to come back for another opp and my recovery times two weeks, you already told me that endo doesn’t show up in scans so what made you assume based on how I describe the hell I was living in that what you would find would be superficial? Pretty sure the seven years wait for your diagnosis is linked to young women and girls being under minded when it comes to their body” she agreed and suggested I check out this forum ... so here I am? Do any of you share my thoughts? Did you find that the older you got the more receptive medical professionals where or does the sh*t show continue regardless?

[Overthisbs_]

Couldn’t * not could eat.

[ZiggyandBC]

Hi, I’m one week post op too! Hope you’re feeling okay! I also had to do a hell of a lot of chasing and calling lots of different people to try and get them to listen to me and believe me when I told them how much pain I was in. I’m 22 so I do feel like I was brushed off because of my age. I have a high tolerance for pain and don’t like to complain but the amount of pain I was in wasn’t in any way normal but i still wasn’t taken seriously. On one occasion I called 111 as I almost fainted due to the pain and I was home alone and they told me to call my GP which I did and my GP just said ‘if you feel faint then have something to eat or go to A&E’ like I wasn’t being taken seriously at all! I’m thankful to finally have a diagnosis and to be able to say I DO have endometriosis and this is why I’m in so much pain. Something definitely needs to be done but I feel that unless a doctor specialises in endo, they just don’t know much about it (in my experience) I’m very thankful to be under an endometriosis specialist now who actually understands what he’s talking about but god it’s been a long wait to finally get here! X

[Lucyloo02]

I honestly do think age plays a part in how long it takes to get a diagnosis. I was told for years that I was a teenager and I would just grow out of it, and that the pain was just something that I’d eventually grow out of. Needless to say I never grew out of it and if anything as I got older it got worse. However I was also denied a lap so many times over the last few years because I was “too young”. It took me going privately & putting myself in debt at 21 to get my diagnosis two weeks ago. Meanwhile I received a letter today from the gynaecologist I was under at the nhs hospital to tell me to consider going on the coil again before he would consider surgery 🤦🏻‍♀️

[Krisamoy]

Definitely, when you are younger they don't take you serious. Even, your experience going into ED in pain. Like, it's our body it is shouting at us that's something is wrong! I tell you this, I am in healthcare and until I went through this I didn't know that health professionals belittle patients this much. One of my experiences was being in pain and my belly was so hot and I couldn't hold the pain, I couldn't sit I was on the floor and bawling. I had been there for hours because the nurse thought I could bare the pain. I was in agony, it felt Noone cared. It wasn't until I fainted that I got seen. Eventually, I got admitted that night. And, even while in hospital I was treated horribly by most of the staff. I felt ignored because of my age. The doctors found I have two large cyst in the ovaries one hemorrhagic and an inflamed pelvis. Like, they only took my pain serious when they saw the scan. It's getting increasingly worse with more symptoms and I have to be begging for them to do the laparoscopy. My CA 125 is so elevated, but they are coming up with more excuses every time. I do believe I will be done soon. However, the journey as been so dreadful.

[RenRemSasse in reply to Krisamoy]

Oh my days. Get well.

[EndoJaz]

I suffered from age 12 and only finally diagnosed at 40 and by that time it was everywhere and had to have hysterectomy and then further excision last year, now 46 and still in pain. It’s never ending and I get so mad for all the women like me who have had their education, jobs and whole lives ruined by this and just ignored and told it’s normal, it’s imagined and all that crap, it’s so unfair, hope u recover well, take it easy x

[Gardenist]

I hope you recover well. It sounds like you have really been through it. It is my feeling that the medical profession in general don't know what to do with us and so they play for time and many do it in a very cruel way. There is no cure only management and unlike many other conditions the advice and help we get is terrible. 29 years into this and I think all age has done is wear me down and teach me some lessons so that I'm more of an advocate for myself than I was. Things I consider are:

There is something very wrong with the medical profession making comparisons and sweeping generalisations. Telling someone that everyone else gets period pain and to get on with it. When you can't actually even walk by yourself to go to the toilet ...from the age of 12.....for years and years and years.... has an effect on you which is beyond physical. You look round and feel like you are mad because half the population gets this every 3 weeks and they can manage and don't mention it? And then finally someone cuts you open and says what a mess, how did you live like this? It is hard not to be angry about the quality of life these people have robbed you of from not listening and leaving you alone to deal with it for well over a decade.

By far the best management I have found to be diet, exercise, sleep and stress reduction related. I do not understand why this is still an aside to surgery and pills. It's the basics of giving your body what it does and doesn't need. Again no comparisons with others. I am not at the starting point of a well person but someone who's systems are overloaded and broken. I used to be angry that I couldn't just live how I wanted. Now I understand that this is the body I have and the only one I will have. Don't get me wrong I still need surgery and pills but the idea that I will be 'fixed' is long gone. I could have done with some help to understand it all. I got there in the end and found what works for me. I don't think the medical profession sees this as their remit. But it keeps me out of their waiting room so maybe they should.

I'm waiting for operation number 4 now. I'll be waiting for 11 months for a virtual appointment even though they already know what surgery I need. The pandemic has only made our suffering worse I fear. I understand the effect it has had on resources but I'm yet to come across anyone that has treated me like more than a number as I explain what my quality of life gets reduced to.

Hope you recover well and well done for standing up for yourself. It could help someone else in the future to. That's what I think when I politely educate people ignorant of the condition.

[RenRemSasse in reply to Gardenist]

All the Best!

[Hidden]

I agree that age is a factor in why so many diagnoses take so long. My daughter has been having symptoms since she was 13 and has been hospitalised once. We finally got an appointment with an adolescent gynaecologist last year and she was very honest about how my daughter's age would inform the approach to her treatment - which is to explore every possible first line of treatment (e.g. physio, continuous COC use) rather than having a lap. To be fair, I think that her reasoning on this is fairly sound - a lap is invasive and, because adolescent endo looks very different to adult endo it is easily missed even with a lap, so there is a danger that my daughter could go through the stress of having the procedure but still being told there's nothing wrong. At the moment my daughter has finally been put on a COC that provides some relief (although there is still lots of breakthrough bleeding) so I am happy to go along with the gynaecologist's approach at this point. However, I think the bigger issue for us all is the lack of any reliable non-surgical diagnostic tools or treatments. Many women and girls would be diagnosed much more quickly, regardless of age, if there was a suitably accurate non-surgical alternative to the lap (e.g. blood tests or scans), and they would be much more likely to receive treatment more quickly if this didn't involve either surgery or drugs that induce such serious side effects. Of course this would require some substantial investment in research which, as we know, is rarely forthcoming for conditions that affect women and girls - which is why we're still using instruments developed in the 19th Century for cervical screening tests (when less invasive HPV testing would be just as effective) and women continue to be expected to undergo other painful gynaecological procedures without anaesthesia as a matter of routine. I could go further, but it would only put me in a bad mood for the rest of the weekend..

[Gardenist in reply to Hidden]

It is brilliant that your daughter has you in her corner. I wonder if my own daughter will have problems when she gets to that age and how we will handle it. The issue of preserving fertility is obviously much more of a concern when you are younger and limits some of your options. I honestly don't think I would have chosen to have my more invasive surgeries earlier, if I'd been given that choice to make. Thankfully things have at least moved on somewhat from my experience of treatment options not even being something a GP was aware of or willing to make a referral. I completely agree that the problem lies so much with the only reliable diagnosis being to cut you open. Who wants that for their child, especially if the result is a negative. I hope that something can be done to find a different way to make a diagnosis and in the meantime that our voices are heard and not dismissed.

[MaggieSylvie]

Gynaecologists should be made to read these posts. I do not have endometriosis but I have read enough here over time to see that people who have it are not being treated properly or as urgently as they need. You wouldn't let an animal suffer like this.

[Lofty1589]

I had my first op at 19 and 100% age is used against us. Make sure to do as much research as you can and look at NICE guidelines. Make sure you are referred to a BSGE specialist as your Endo is so severe. Good luck x

[USgalwthendo]

I work in healthcare. I can’t imagine telling a cancer patient they are faking. Or just tough it out. Eat more veggies. Or lying to someone with terminal illness that they will be ok even when there’s no hope. We tell people in other circumstances the truth even when it’s difficult. To dance around it is cruel and violates Hippocratic Oath. When someone with all the pain and agony of endometriosis come to a medical institution they often get fluffed off. It’s unconscionable. I do believe age and gender play a huge part.

I too was told at age 14 that I was a woman and just needed to deal with it writhing on my grandmothers floor unable to get up. Paralyzed by pain. She wouldn’t take me to emergency care. My doctor fobbed me off the same way at age 24. Wasn’t diagnosed until age 33 due to infertility and by then it was too late.

It doesn’t help that women aren’t even taught about their bodies growing up. I tell friends with daughters if they complain about anything period related to take it seriously. I advocate in my own circle. It’s too late for me but not for the next generation. I also applaud you for your strong self advocacy!!! It’s hard to do especially when the medical establishment is against you.

Family support helps immensely. If the medical was against me at 14 but my family had my back I’m sure I would have got answers. But my own family failed me. And my grandmother has long since passed away and I don’t speak ill of her now but I wonder if she had suffered from endo as well? Perhaps she was also a victim of the same system.

I agree with another post that it does a lot of mental harm. Everyone else apparently walking around with painful monthlies, totally dealing with it but I can’t? What’s wrong with me? It does screw you up mentally not just physically. I believe that is why such relief and feelings of vindication when that diagnosis actually comes.

I’m going to continue advocating and speaking out even if just my own social circle. The more of us who raise awareness the better for all. 🙂