Bad gyn experience

[Ellyfant]

Hi guys, I've just gotten out an appointment with a new gyny and was told that as I don't have acute pain there is no chance I have endo and that it's because I am overweight (which my GP has said is completely untrue as I am a healthy weight). I've been waiting 8 months for a laparoscopy now after years of referrals with no luck and just feel defeated. I know that this won't effect my treatment because it's not my regular gyn but I was wondering if anyone else has had similar experiences with gyns?? I felt like she was belittling me and being incredibly patronising (I explained that it was chronic pain but because I've had it so long I'd say it's 4/10 but if she asked me before it was much worse, and she told me that it's all in my head then and I just need to think positively and eat better and I'll be sorted) despite the fact I only told her what I was told by other medical professionals. Does anyone have any advice on how to cope after an appointment like this? Also - (sorry for the long long post) has anyone been on GnRH analogues for longer than 6months, (I am now on 8) and if so were you told that you could not have endo as it stops all cramping and therefore the cramps are all in your head?? I am feeling slightly defeated.

[butterfliez]

Hi I’m sorry for the bad experience you’ve had at this appointment today ( nothing worse when you’ve been waiting for this )

You don’t have to have severe pain to have endometriosis, everybody’s symptoms are different, for example I was diagnosed with stage 4 endometriosis last year , I had no significant pain issues just what I thought was usual period cramps & some issues with pain in my bowels. I only knew once they did laparoscopy to remove a cyst which was a 10cm endometrioma. This was only detected during ivf treatment.

So I’ve had Endo for years but never knew.

She is wrong to play down your symptoms & further investigations as no matter how painful or not it is for you it’s obviously something your concerned about otherwise you wouldn’t be going through all this , hopefully this won’t affect your future treatment / tests ... I was on prostap injections for 3 months at a time throughout this year. x

[Ellyfant in reply to butterfliez]

Hi! Thank you so much for responding 💞💞 I'm so sorry you've gone through this! It's good to know that she is not being accurate saying that it only exists if it's acute pain.

It means alot to hear your story and to hear someone say it's not right for symptoms to be down played.

I hope you are doing well x

[Keeksuk]

I’m so sorry you’ve experienced this and I’m surprised that you were informed that you were advised that with mild symptoms it is unlikely to be endo.

Women can get endometriosis and be asymptomatic. I actually know a couple of women who were asymptomatic and had a lot of endometriosis tissue scarring.

Have you received an ultrasound to see if they find anything? Although, sometimes this process can miss signs of endometriosis.

I have had a bad gyno experience (I am with a new gyno now). I went through PALs to explain the situation and I asked for a second opinion.

Hang in there, unfortunately there are still many cases where endo sufferers go through a painful and very long process to finally get looked at and with a result.

I hope this helps and May I also recommend @your_fertility_journey on Instagram. Kate Davis is a fertility coach but has been a great help towards guiding me through my endo journey. There are also really informative podcasts on endometriosis. I also recommend this link: nice.org.uk/guidance/ng73

All the best,

[Techpig in reply to Keeksuk]

Hi sorry you had to deal with this, it's part of the reason it takes on average 8 years or more to diagnose ! It's ridiculous.

I had very mild pain, only pain during sex and bowel issues. I had stage 3 endo on laproscopy, and the endo was found during a ultrasound for something else, I was 29. I had been going to the doctors since I was 18 with various gynae issues and got absolutely no where so I still believe it's in my head ! If I had got this resolved sooner I doubt I would now need bowel survey but who knows.

Just keep on with your appointments and try and ignore this. Hope your laproscopy appt comes through soon !

[Hailun]

Sorry to hear your experience. Unfortunately it’s only too common.

I’ve seen several gynaes over the years. Most of whom I’ve had to really push to put me forward for a lap or to give me something other than the pill. They seem to want to always keep me on the pill or similar hormone treatment even though I get bad side effects; and tell me always that period pain (for3 weeks every month), dizziness, vomiting, fainting etc is normal,

The gynae I saw before my lap in 2013 was very reluctant to put me forward for it, but did after consulting with her supervisor, whom I never saw. The registrar who did the lap was even worse. On the day of my lap (when I anyway had my period to top it off) she tried to make me sign a document to give permission to put in a mirena coil during the lap. Now I’m not going to give permission for such a long treatment without first researching and discussing if that really is the best option. In the end I had to threaten her with legal action if she dared to put it in without my consent. She also told me that there is no way that I have endometriosis as I’ve been on the pill for 10 years. She said that I’ve not had a true period in those years and endo has no chance to grow. She said that there is no point in doing the lap but if I insist she will. Honestly I wanted to walk out, but I was so desperate for relief from the pain I stayed. When she’d finished the lap, she apologized, saying it is the worst case of endo she had ever seen. She told me to get pregnant as soon as possible (I had just started seeing someone, but we weren’t that far into the relationship), and discharged me. I was never invited to a follow up, and thankfully soon after moved abroad.

I wanted to report this registrar, and one of the nurse’s who worked on the ward. She was also incredibly dismissive of me (one example - she said to my face that I was exaggerating my symptoms. After I’d been awake for a couple of hours after the surgery, my sister visited me and I told her that I was hungry. She asked the nurse for some toast or something small for me. The nurse replied in my presence; „we’re not a café, I can’t just make toast for you whenever you feel like it!“. I remained in the hospital until the following day as my surgery was quite extensive and was not offered anything to eat or drink), but I honestly didn’t have the emotional strength.

Sorry that this has turned into a much longer post than I intended! The fact is, you know your body. Unfortunately our concerns are often dismissed and we are not listened to. So please, keep on going. Take a friend or an advocate with you to speak on your behalf, to take notes and to remember the conversation. Don’t be fobbed off when you know something is wrong.

Now I have a good gynae who actually listens to me. Unfortunately it’s hard to find a good one and hard to have a choice in who you see. I wish you all the best though and hope that you get whatever treatment you need. Xx

[Bethleah]

You need to ask for a second opinion and complain in writing about her treatment of you (or lack of) . Contact pals at the hospital. Make sure it’s all in writing.

You can take it for longer but it doesn’t work for everyone. Just because it stops cramping ( it can do for some) doesn’t mean the Endo is gone. This is all bull. Check out endometriosis uk. They also have a helpline I think that will support you.

I believe to be in healthcare especially as doctors etc you must have compassion and people skills which some lack. Over the years I was told it’s supposed to be painful etc. Your weight has nothing to do with it but many find hormone treatment makes you gain weight. I would check out endometriosis uk then complain through pals. It’s no wonder with attitudes like this that we are are no further forward with Endo. Good luck

[TOC2]

Hi. I have had stage 4 endo 3 times. and i think its back again. Endo is personal to you. but, you do really need a good gynae-y to get the proper help. I went private initially and then because i had to get so much done to clear mine, my consultant transferred me over to him as an NHS patient. this can be done. My message to you is don't give up. This is important to address. Its an up hill battle , but 6 months after most of my surgeries i do feel great for a period of time. and its worth every minute. battle for you. you are worth it. Good luck

[Moon_maiden]

I’d contact your regular gynae’s secretary and explain what’s happened and ask for an appointment with them. Even if it’s over the phone. Honestly, I wonder why some people become doctors, let alone specialising in something so complex.

Try not to take what they’ve said to you about all in your head, it’s a ridiculous thing to say.

The injections are only licensed for endo for six months, others have said they have been on longer. A doctor should be going through this with you and you should be signing off on it if you are happy to continue. Speak to GP or mention to gynae secretary.

Take care 🙂