Disappointing gnae referral : I recently... - Endometriosis UK

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Disappointing gnae referral

Empo profile image
Empo
14 Replies

I recently had my first gnae appointment and left feeling deflated.

Since last year I have been told many suspected reasons for my gnae pain. The latest was adenomyosis and endometriosis from ultra sound results.

I was told my referral to gnae was to start the process of a lap to rid me of the adenomyosis and endometriosis.

My gnaecologist told me she looked at my scans and they seem relatively normal and she wishes "they didn't write that on the scan results " - referring to my adenomyosis and endometriosis. The only reason she gave me for not having adenomyosis was my age. The fact I am only 26years old and have no children. I have done plenty of research and as I know many women diagnosed lie in that bracket I also know many women who don't have been diagnosed and treated for adenomyosis.

She suspects endometriosis but also has high suspicions of IBS. Which in my opinion is bs! I've suffered from severe periods since I was 13years old which have multiplied in pain heaviness and clotting in the last year. Taking massive amounts of time off work. (Now in the process of reducing hours). Losing days due to sleep and exhaustion. Severe pain when not on period taking my breath away, throwing up etc.

Told me she wouldn't be going down the route of a lap yet and subscribed me the pill.

I am feeling so angry and disappointed. After waiting so long for an appointment to be told basically my scan was normal and my internal was normal. Being told do many different things is so frustrating.

I stood outside the hospital and broke down.

Can I ask my gp for a second opinion? I really didn't feel she was too interested in treating me for the endo and spent too much time focusing on none existing IBS.

Sorry for the long post.

Thanks for any advice.

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Empo
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14 Replies
Poppy16 profile image
Poppy16

So sorry to hear you have had an unsatisfactory gynae referral. I actually had my gynae referral appointment last week and like yourself was no closer to finding a solution. I was told they could do nothing for me as my husband and I are trying for a family! I have since secured an appointment privately with a gynae specialist. I know it is money but in my opinion, will hopefully be worth it! Yes definitely try and get a second opinion or even go private if this would be an option for you. Sending you a big hug. Seems like alot of women on this forum have to keep on fighting to get the help they need. X

Empo profile image
Empo in reply toPoppy16

Thank you for your response. I have thought about going private. As I've dropped my hours at work it would be a struggle but obviously something I am willing to look into.

I had started to come to terms with having adenomyosis and endometriosis only to be told I'm too young to have that.

I will definitely look into going private.

Lizzielizzielizzie profile image
Lizzielizzielizzie in reply toEmpo

Poppy16, you can definitely have a lap when trying for a baby, you just have to stop trying that month so there's no chance you could be pregnant when they operate. If you are having any difficulty falling pregnant, make sure you push for a laparoscopy as soon as possible xx

Poppy16 profile image
Poppy16 in reply toLizzielizzielizzie

Thanks Lizzie for advice. I will let you know how my appointment goes next week with specialist. I will mention that I have had great difficulty getting pregnant and could I get a laparoscopy to assess what is going on. Hope you are doing ok.x

KarenJJ profile image
KarenJJ

I'm sorry to hear you broke down :( Very similar happened to me with my first gynae referral (which isn't exactly a walk in the park to get in the first place!). Sadly, it seems to be quite common from reading lots of posts on here. Like Poppy16, I went private to seek a second opinion to get the ball rolling for a diagnostic lap, but I realise this isn't something everyone is in the position to do. I hope you can work something out with your GP, I would go back if this is the only option you have.

Best of luck

xx

Empo profile image
Empo in reply toKarenJJ

Thank you for responding.

I will definitely look into going private.

Feel like a ball being tossed from one person to another.

sanchia46 profile image
sanchia46

The ultra sound scan does not show up endo clearly. Only way they can see this is a lap. Try and push for a second opinion

Empo profile image
Empo in reply tosanchia46

I know this. Which is why I wanted the lap.

Thanks

Flowersandhearts profile image
Flowersandhearts

Hi there

I'm so sorry you've had this experience. It really makes me realise how lucky we are to have this forum to be able to access support and reassurance from each other. I've found an old post on here that might help...

healthunlocked.com/endometr...

Sending you lots of love and support xx

Empo profile image
Empo in reply toFlowersandhearts

Thank you so much xx

Starstellar7 profile image
Starstellar7

It sounds as if you just aren't getting the right treatment. Can you get to an accredited centre? Lindle has links on here or your can just Google it.

Can you tolerate the pill or better for endo a progesterone based tablet - if taken continuously your periods should stop so you aren't dealing with the worst symptoms.

If you are in that much pain and it is causing you to reduce work then it is serious. I think you need another gynae, most gynae are not specialists with endo and have no idea how horrible it is.

I've had three surgeries and lots of treatment including ivf. It causes so many issues worst of them all is if it feels noone is listening or helping. Be strong, change your Dr.

Hugs xx

Empo profile image
Empo in reply toStarstellar7

Thank you. I feel as though I'm banging my head against a brick wall. I really didn't feel as though this gnaecologist was for me. Didn't feel as though it was a specialist area. I will go back to gp and ask for a second opinion. X

Heloo85 profile image
Heloo85

The thing is i know you feel let down, but there is in fact 3 recognised treatments for endo. 1 is contreception. 2 is chemical menopause and if they fail theres 3 surgery (which is no miraculous cure either). I know it feels like youve been fobbed off, but the pill has helped many of women on here! .. Try the pill, if it works, great. If it doesnt go back!

zedebe profile image
zedebe

Hi,

I feel your pain as exactly the same happened to me! I had my first appointment a few years ago and after having an internal and an ultrasound she said she didn't think it was endo and referred me back to my GP so I kept going back saying I can't cope anymore and I asked to be seen again but while waiting I paid to go private and that was a complete waste of money as she basically said it isn't endo and told me getting pregnant would help! I was so deflated but I kept my second referral appointment and saw a male consultant and he was great, very sympathetic and said he would be very surprised it isn't endo with my history so finally on the list for a laparoscopy! My advice to you would be to go back to your GP and ask to be referred again! Don't give up!

Take care

Z

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