Getting diagnosed - how do you make your ... - Endometriosis UK

Endometriosis UK
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Getting diagnosed - how do you make your doctor listen?

charbee
charbee

Hi all, I have had symptoms of endometriosis for 5 years which are getting worse. I mentioned it for the first time to my GP last summer, who quickly dismissed it saying there was nothing they could do to treat it so it was useless trying to get a diagnosis. Since then I have really suffered and I finally have an appointment with a gynaecologist on Monday.

However, the appointment is to discuss the symptoms I have been suffering from and not endometriosis itself. I would like to have the conversation, but don't know how to best approach it without being dismissed. I have filled out the consultation questionnaire (endometriosis-uk.org/sites/...), retroactively wrote a pain and symptoms journal for the last 5 years, highlighting the main "flaring" events and I have crossed referenced my symptoms with those of endometriosis (endometriosis-uk.org/endome...).

I am terrified I will not be taken seriously again and my symptoms will be dismissed. I appreciate there is not treatment for endometriosis yet, but a diagnosis would be a step in the right direction. What else would you recommend so I am as prepared as possible for my appointment?

Thank you so much for your help,

Charline

16 Replies
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Sounds like you’re all prepared 👌🏻

The checklist and diary helped me. Good luck x

charbee
charbee in reply to Cupcake1617

Thank you so much. Any tips on how to approach it with the Gynaecologist? I have been known to be (too) blunt and upfront... I am now bringing a friend for support and she is allowed to jump in! Thank you again :)

I’ve always listened to them and then gave my point of view. They gave me the lap because from my diary I worked out the % each month I bled and was in pain so they couldn’t really argue it. Yes taking someone is so helpful! I’ve been taking my mum for the past year and when I haven’t got the heart to say things she does x

charbee
charbee in reply to Cupcake1617

Great advice thank you x

I think you might need to be a little more assertive and request that he/she refer you for the necessary scans to either confirm your suspicions or rule it out. It’s crazy that you have had to wait so long. I was very lucky with an extremely supportive dr it’s a shame that does not always apply. It’s all about who you see. I hope all goes well.

Your symptoms are most likely to continue being dismissed unless you go to an ACTUAL endo specialist. Even if the gynae you have an appointment with on Monday will tell you you have endo, he/she might not be able to advise you in the best way regarding treatment. He/she will probably suggest going on birth control or the Mirena coil and maybe undergo explorative surgery.

While the first might help temporarily, explorative/diagnostic surgery is something I am strongly against. Surgery has to be performed only by an experienced ecxision surgeon with the AIM of removing all endometriosic lesions and not just diagnose endo.

Getting surgery just to get a diagnosis can be extremely counterproductive because the more surgeries you get, the higher the chance of getting adhesions and for endo to re-occur.

The biggest piece of advice I can give you is to go to this gyae and listen to what he/she has to say. If all they suggest is hormones, the Mirena coil or diagnostic surgery, you can decide in favour of the first two but decline the latter.

Then the next step would be to contact an experienced endo specialist working at a BSGE centre or a Nancy Nook doctor (best option).

THE BEST PRESENT AN ENDO SISTER CAN GIVE HERSELF IS TO GET EXCISION SURGERY WITH A NANCY NOOK DOCTOR. This is the best option out there

Your doing the right thing I took a list of all my symptoms and pain and I'm now waiting on a lap to diagnose endometriosis and a ablation on my adenomyosis, good luck hope you get what you need xx

Really push for what you want. Say how it is effecting your life, go in and know what you want to happen such as being referred to the specialist by your GP. I rang the helpline and spoke to an amazing lady who made me feel confident going into my GP appointment. I also made sure I saw different GPS every time. It took seeing 6 different GP until I found one who listened and got it! Keep going you will get there :) xx

Thank you so much everybody, all your comments are very useful. I keep my fingers crossed I will meet with a sympathetic gynae. Cerazette works ok, but I am still in pain at least once a week and still get flare ups where I suffer every day. I don't want to go back on Mirena because it hurt too much the first time around... I think at the moment I just want a diagnosis so I have something to tell my employer when I have to miss work...

I had my appointment today and the gynae said I don't have Endometriosis otherwise I "would have painful intercourse everytime and it would have shown on scans" which I know is rubbish. He refused to even listen to my symptoms. All he said to me was "I have been doing this job for 30 years, I know" to which I replied "I have been suffering for 5 years and you haven't listened to any of my symptoms so you don't know". He then offered a laparoscopy so we could rule it out. I am glad it is moving forward and I haven't been dismissed, but infuriated I am not listened to. How do we stand a chance if highly qualified and experienced consultants won't even listen?! Anyway, rant over. I would be grateful for any advice, comments, etc. Thanks again :)

I had severe endometriosis. The symptoms were so severe I had to have a Hysterectomy at 28 years old. The pain was awful, loosing huge clots of blood, plus my GP could not examine me due to my pain. Hence, I could not go through another period. Also, I lost blood and clots from my bowel, like a period from my bowel. It was awful. I could not have my ovaries removed due to me being so young. Hence, I am now 64, but I still lose blood from my bowel most days. I suggest you stress how much pain you are having, how it is affecting your life. Also stress that you are willing to try any treatment available to try and solve your issue. If you have a husband, boyfriend or friend who can go with you it would help.

charbee
charbee in reply to ourmolly

I am so sorry this happened and is still happening to you. It makes me so sad such a huge amount of women are suffering like this and yet nothing seems to be done about it. I took a friend with me and it was helpful, I was assertive but polite and accepted the laparoscopy, I am just terrified of being put under... I guess on the grand scheme of things it's nothing though. Thank you for your story and your advice, I hope they find the right treatment soon x

If you undergo this lap, make sure to ask that you need to know where the endo is located and its level. I am 11 months post lap and still don't have these info, no support, no treatment. You have a legal right to be informed of their findings and to be given an accurate diagnosis. Make them aware of this before the lap so that they don't try to fob you off.

Good luck!

Your story sounds a bit like mine in many ways.

Is there an endo specialist involved in your care at all? I think it's important to make sure that an expert carries out the lap because I hear lots of stories about inadequate laps.

My GP says the older consultants are experienced but don't tend to have the specialist knowledge like more recently qualified gynaecologists because the training & practice has changed over the years.

I was so grateful to be seen by a gynae after years of problems but he wasn't a specialist which meant I wasted my time & was made to feel like crap. I have now been referred to a specialist though.

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