Validation after clear scans and being told I didn't have endo

[KezMurr]

Hi ladies,

I just wanted to share my story in the hopes of it reaching someone in a similar pickle. I've had endo for about 7 or 8 years (or at least at that point it became painful). I have been dismissed by many doctors and gynos which I'm sure you can all relate to. I had an MRI and a trans vaginal ultrasound, all of which came back clear. From those results, a gyno specifically told me I couldn't have endo so that's 'good news'. It wasn't good news, I was still in pain and couldn't have sex with my partner without feeling like his penis was Mike Tyson doing 12 rounds in my vagina!! I asked for a laparoscopy (not for the first time and with 2 other gynos) but they all said no, my symptoms were not enough.

She again, dismissed me and said now the focus will be on fertility and not treatment for the pain. I love how she expected me to continue having painful sex... so easy for someone to suggest this who has never experienced it. I also have vulvodynia which is another layer of pain. She discharged me. This is then what caused me to give up on wanting kids which weirdly I'm actually okay with now. I've accepted it and have come to the realisation that there are a lot of positives to not having them so I'm at peace with that. However, the pain of course continued as it always had.

I went back to the doctor for yet another referral. Thankfully and finally, this time I got a gyno who actually listened to me, really listened. And ironically, explaining my symptoms to her was the most deflated and lacklustre I had ever been when describing them. Perhaps she sensed that I was fed up of this circus. It took her mere minutes to refer me for a laproscopy once she let me speak. I cried.

I had my laproscopy on Monday just gone. I have stage 4 endo and it had fused my ovaries to my uterus and my uterus to my bowel/rectum. The pain during sex was because of this fusing of organs. If the doctors and gynos who dismissed me had listened to me years ago when I requested a laproscopy, maybe it never would have gotten to this stage.

When I was told I had endo, I cried. From relief. From validation. From knowing that I could no longer be dismissed. From knowing, I no longer had to fight to get a medical professional to believe my pain.

What a sad time we live in, that we are brought to tears of relief when we are finally diagnosed with a debilitating condition.

You are not alone, although it feels like it at times. There are thousands of us woman experiencing this. You know your body better than a medical professional ever will. They do not always know best evidently. If your gut tells you something is not right and/or you're in pain, trust it.

Xx

[MangoStickyRice]

Reading your story brings me so much hope. I am so sorry that it took so long to find someone who would listen. Are you planning on sharing your diagnosis with the medical professionals who dismissed you previously?

[KezMurr in reply to MangoStickyRice]

Hi Mango, I'm so glad my story has given you some hope. I could have included a lot more about all of the failures of various professionals through the years but that would become a book of sorts haha.

Strange you ask that because I was actually thinking of that this morning but the first one who came to mind to contact, was the gyno who listened to me and referred me for the laparoscopy. I want to thank her for being the only one who seemed to know what the hell she was doing!

And I got lucky because she referred me to a consultant for the op who had a lot of experience doing laparoscopies, specifically for finding and excising endo. I was so worried I would get someone inexperienced who would say there's nothing there because they didn't have the skills to find it. I have read about that happening to many people who go on to have more laparoscopies and eventually it is found. Where are you in your journey of diagnosis? I'll have to have another laparoscopy but with a bowel surgeon who can unfuse my bowel and uterus.

I read one of of your previous posts about the metal in your MRI. Did you find out the answer for that? My brother works as a medical physicist and would likely have the answer to what that could have been, if you don't have it already.

Xx

[MangoStickyRice in reply to KezMurr]

Hi Kez

Yeh, the people who listen definitely deserve to be thanked but I know I will be writing to those who messed up with me.

I'm 3 years into a fight for diagnosis. Had multiple US scans, a lap, CT and most recently an MRI. I was referred back to my GP on 3 separate occasions. Everything so far (other than the MRI which they declined me many times before and I had to pay for myself) showed nothing. On countless occasions I have been gaslighted and even told that I can't possibly have endo as it would have been seen. Eventually I went private with an Endo Specialist. Costing a bit but he actually listens. Like, he really listens! The MRI showed adeno to be present but he thinks its likely I do have endo too and that the general gynae that did my lap in November missed it. The good thing is, DIE would have been seen if I had that so I'm slightly relieved. Now booked in for my second lap with him in May. I have confidence he will find what needs finding and sort it out.

I never did get to the bottom of the MRI metal situation. Nothing untoward showed on the MRI (that I have been told about) but strangely enough the scanning pod things at the airport lit my pelvis up like a Christmas tree not so long ago too.

When they find endo (I have to believe they will) I will write letters to those who made mistakes. They need to be aware that if they don't have the knowledge they should just say they don't know. Telling someone that they CANNOT have something when they actually could have it can cause so much pain - physical, emotional, mental - and in cases like yours, damage that shouldn't have gotten to that stage.

Hope you recover well. Also, why not write that book?

[KezMurr in reply to MangoStickyRice]

Yes... you're right, they will all get an email from me too. I actually just came across a letter from one 2 years ago. This is what they said;

'I explained to the patient that the MRI didn't show any evidence of endometriosis, fibroid or ovarian cyst. Patient asked if she could have a laparoscopy. I explained laparoscopy if anything-may show superficial endometriosis - given MRI findings -and this may not be enough to explain her symptoms. I also explained Laparoscopy has risks including damage to internal organs-bowel, bladder, ureters and major blood vessels.'

QUITE INFURIATING! The lap went on to show that I did indeed have endo, fibroids and cysts, and grade 4 is definitely not 'superficial'. Man, some of these professionals... after that I was referred to a general pain clinic for some ridiculous reason. During my first and only visit, the consultants there were baffled as to why I had been referred there.

I'm so sorry your journey has been such an ordeal and struggle. I'm so pleased that you found a consultant who specialises in the area, that is so key. I've got bad news for you though, the MRI doesn't always pick up on DIE. I have stage 4 and my MRI was completely 'clear'. The lap by a specialist consultant is the only way to see what's going on in there. I have confidence that your new guy will find the endo too.

That's so strange about the metal! Glad nothing came out it though lol. Keep in touch about what happens in May xx

[1Poppy1234]

I'm so sorry when you read this over and over and are experiencing all these things yourself you wonder why on earth noone listens??? I have found women Doctors to be worse than men. Which is ridiculous.

[Avourneen]

Well done you for fighting on.

It's so strange that doctors often seem to take the view that patients are just making things up. Why would anyone do that ? It makes no sense. My endo showed up right away on an MRI but with ultrasounds one showed it well the other didn't. A lot of sonographers have not training in doing scans for endo and they miss it but sometimes for some weird reason it just doesn't show up. Gynaecologists should know this and if a patient is experiencing every symptom typical of endo then they should have a lap. There are also lots of mistakes made, I know on my second ultrasound I was sent someone elses results with my name on, the only reason I realised was it reported I had an IUD which I have never had!!! Who knows how many scans get mixed up etc.

You are really courageous to have kept on fighting and pushing for help, doctors don't realise how debilitating the condition is and how hard it is psychologically to be in terrible pain all the time, frankly being turned away and disbelieved could lead some people to take their own lives.

So well done for posting, the medical profession wont help, politicians are a waste of time the only people endo sufferers can rely on are ourselves, I'm sure your post will give other women the strength to keep fighting for recognition and for treatment. Thank you.

[BloomingMarvellous]

Absolutely, stick to your gut feelings. Self trust. You might like a book by Elinor Cleghorn titled Unwell Women. Discusses the silencing of women’s voices on their medical welfare and lack of care.

It took medics 44 years to finally diagnose me . I only got there because cousins kindly suggested it after they were diagnosed too and were pretty clear that was also likely my issue. I had all the classic hallmarks . The relief psychologically has been enormous however getting care the older you get if it doesn’t die down post menopause is exceptionally hard. The myth that somehow it ceases to be an issue hobbles both the medics and the patients.

Talking and raising awareness is so crucial. It’s the only way change will take place or be funded. Poor research and dreadful care options mean many of us are not only suffering from the disease and its co-morbid friends, having family options taken away, ruining relationships, but loss of working capacities and income make it an impossible task to stay ahead of its effects.