being dismissed

[booksmoscato123]

i’m currently with the hospital after being diagnosed with adenomyosis a couple years ago. i’m having physio for my pelvic muscles, they’ve said it’s improved but i’m struggling with bleeding constantly and extreme pain even on 2 birth control pills a day and 3 norethestirone a day. i’m telling them how bad it is and today i was told it’s just chronic pain and it’s not bad enough to get an appointment with a gynaecologist. that im fine and it’s nothing. i’m just so frustrated and don’t know what to do.

[AllthatGlitters]

Hello, I have adenomyosis and have problems with flooding through pads & clothes with blood and labour like pains.

You are being dismissed by whoever told you it’s “just chronic pain”, I wouldn’t accept it - you know how bad it is & you live with this everyday.

I would do 1 of 2 things if I were in your position.

1. Take a parent with you to the GP and ask to be referred to gynaecology, list all of your symptoms.

2. Have a private consultation with a gynaecologist mine cost £200, you can still go to nhs for any scans etc ….

I have had 2 endometrial ablation Novasure which has helped me greatly.

I hope that helps you in some way xx

[Chel91]

Have you ever had a laparoscopy to look for endometriosis? It is likely you also have this if not. Surgery could possibly reduce or completely cure your pain. It did for me. It is way too common that I see adenomyosis be blamed for all pain before endo surgery is even done. After my surgery my periods are now completely pain free (which never ever happened before)! They are still heavy, but with no pain it's very manageable.

Ask to be referred to a specialist Endo center. You may have to keep pushing or transfer to another GP. Also yes you can pay for the private consult with an endo surgeon (dual private and NHS), he can then refer you back to the NHS so you can at least get an appointment to get on the wait list. I would avoid endometrial ablation if you possibly ever want future children. All the best x

[booksmoscato123 in reply to Chel91]

thank you! i’ve asked about surgery but i was told they won’t do it unless im trying for kids and struggling, but im only 22 so who knows when that’ll be! i was also told its a pointless surgery and wont help with my pain at all. but i will look at the specialist endo centre so thank you for that

[JOSANDY40]

Well I think we all understand your feelings but what do you feel you can gain by seeing a Gynae? They say it's pain, they can't fix that? Pain meds, meditation, perhaps orgasm to release tension. Unfortunately pain, bleeding is normal with this illness. Yes we all get very down there's no simple answer. A part from the terrible pain I've felt, exhaustion, low feeling and there's always inside me sometimes I want to escape myself and the distress, disappointment of missing out on family or friends.If you have bloating which increases inflammation, effecting, all organs in the lower trunk you could think about the Low Food Map for easier foods to digest. Foods with no Histamines, perhaps cut out gluten or lactose. Don't eat soya as it has Estrogens in it. Anything to make digestion easier as your body it undermined by your general body able to cope. Fennel and Belladonna when other painkillers don't work.

After years of my illness I have been on antidepressants on /off so you may consider that or so some counselling.

All these things do help, only you know where your at.

Hugs x

[Dokuganryu]

With all due respect, please dont listen to the above commenter Josandy, who seems to suggest theres no point seeing a gynae. This is false and harmful.

You just need to see the right gynae who is an expert in adenomyosis. (I myself have adenomyosis and possible traces of endo were seen on an ultrasound by an expert). The extreme pain and heavy bleeding will not be solved by counselling or meditation or orgasm as the commenter suggests. This is enormously outdated advice, often rooted in the alternative medicine arena. I'm so sorry but had to comment as felt this advice above was yet again gaslighting you. (Although an sure the commenter did not intend this, and can see theyve been thru a lot themselves and was just trying to help from their perspective)

From what I have learnt so far, whilst there are no ideal solutions there are certainly different medications and treatments and surgeries that may help or may even stop the pain or reduce, or shift it for a while.

I recommend looking up Dr Rebecca Malik who has done some great videos and articles on adeno and endo, also Martin Hirsch who is an endo specialist. There is also a great webinar by the BSGE that is free to watch all about adenomyosis, and the options to help it, as well as the difficultes many of us face as our doctors often dont know nearly enough about it unless specifically trained.

Also read up the NICE guidelines for extreme pain and heavy bleeding which absolutely state you need to be referred to a gynae. And will if you quote these, that should trigger the doctors where you are to follow thru.

I was in A&E with severe pain and they contacted the gynae department to speed up my referral (had been referred by the GP) as recognised that I couldnt wait as long as I was. I still had to wait a long time but less long!

If you have a friend or family member that can help advocate for you, please do get them in with you to any discussions as that can help. So often we are so exhausted in our sessions and tired of proving ourselves that we end up not managing to say all we need to say or ask for.

I also have a friend who had been thru this for years, and finally a trip to A&E referred her to an endo specialist (she has adeno) and she saw him a few weeks ago, he said "I believe you" and she could finally feel heard and begin the pathway to treatment options with someone who knows what they are talking about.

All of this IS a toll of our mental health, for sure, and things like counselling can support us on that journey 100%, as well as good nutrition, overall wellbeing when we can manage it (altho always hard to do things like exercise on a regular basis with this condition) BUT they will not solve or cure the pain. We do need medical help from someone trained to help us.

Really wish you luck and hope that you get the right referral soon xxx

[booksmoscato123 in reply to Dokuganryu]

thank you, i will have a look at the recommendations! the most annoying part is endo runs in my family and despite this they refuse to think of it as an option! i appreciate you taking the time to comment, it makes a world of difference having all this advice being believed xx

[Dokuganryu]

Super useful thread here to read if you have time packed with more advice

healthunlocked.com/endometr...

[635703]

the Physio needs to go at a pace you can cope with, whilst having awful pain with very heavy bleeding. You can ask to see The Physio Team Leasd, explain what’s been said and try to get another appointment x

[booksmoscato123 in reply to 635703]

yeah that’s the plan! i’ve been with physio for about a year and a half, my muscles have had a huge improvement already, but i rarely get face to face appointments due to the hospital being understaffed. i appreciate you taking the time to comment, thank you x