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Endometriosis UK
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Disappointed gyne apt :(

After a year of asking to be referred, i finally had my gynae appointment today.

I have just taken 4 1/2 days off as my period pain (which started 10 days before i actually came on) was so bad that tramadol wasn't touching it and I was unable to walk or stand... they did an abdo and internal exam which was very painful. I'd already had bloods and swabs taken. They have referred me for an internal scan, as id only had an abdo ultrasound.. and my next appointment is in JANUARY.

I am so gutted, they have given me another pill to try (usually sends me nuts and i bleed continuously). And have asked I go to my GP for more pain killers. I cried for about 2 hours after the appointment as it just seems like another blow, I will have had 6 - 7 periods between now and my next appointment and with no further help. The consultant said she is reluctant to send me for any surgery or investigations as I want to have children in the next couple of years, we have just had an offer on a house accepted and starting a family is in our thoughts. We aren't trying to conceive yet and aren't married yet either but are hoping to be trying next year maybe. I am so deflated, I feel like no one I speak to is taking my pain seriously. My colleagues are either supporting or just bitchy, my (female) manager is a bully and I know I will be pulled into the office over having a longer period of sickness this month. I have applied for a new job but I know my absences are going to go against me :( I don't know what to do.

My boyfriend has private cover through his work so might get the ball rolling on going private. I have never felt so lost with this illness as I do now. I know that work is going to be horrible and the pain is every day now instead of just when I am on.

I just needed to have a moan and am begging for reassurance, does it ever get any better?! :(

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First of all, I'm so sorry. I think it's entirely understandable to be upset. When would you get the internal U/S results? In January? I can't believe they're making you wait so long.

I think I have read somewhere that you can go private to get the ball rolling, then switch back to NHS, but I'm hoping someone more informed than me can confirm for you.

I understood that surgery for endometriosis wouldn't affect your fertility and, in fact, is often done to improve your chance of conceiving, so I do not see that a diagnostic laparoscopy with some conservative treatment (if endo were found) would be to your detriment.

I don't know what else to suggest at the moment, but will have a think. Hopefully some more 'experienced' endo sufferers will be able to advise as well. x

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Thank you so so much for your reply. Its so easy to feel alone going through all of this so I am really grateful for your message.

I don't know if they will make me wait until Jan or pull me in earlier, the Dr said she would try to see me sooner once she had the scan results but I dont think it is a regular clinic. I get it that I'm not dying or anything but it would be nice to be seen sooner. It just feels like a massive deflated outcome after waiting so long.

I am DREADING going to work on Monday as I know my manager is going to be really angry and tell me how I am not a team player etc. But I am trying my best with work. Fingers crossed for the new role, especially with having a mortgage in the pipe line etc.

I spoke to my Dad after the appointment as my mum was out and he was really supportive, if anything I think it has brought us closer. He suggested a novelty heat pad he bought me (pug!) and a gallon of ice cream and said he is counting up all the hugs he owes me (they live a flight away). So it's great to have his support. And my bf stayed home last night with me and made us dirty dinner, his brother was playing a gig so was nice that he chose to stay with me insteadof going out with his mates. I just hope we can have children eventually.

Sorry rant rant rant!

Going to speak to GP today and ask about private referal so will update the page if I have any success to see if it can help anyone else on here.

Thanks so much for your reply Gwen, sorry ive gone on a bit of a tangent here as always!

Sending lots of love and thanks your way! xxxx

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As I said, I'm not surprised you're upset. How did you get on with the private referral? I was going to suggest you join the 'EndoRevisited UK support and education group' on Facebook. I think some people on there have gone private initially, then switched back to NHS, so if you ask they should be able to advise.

Otherwise if your period pain is the main problem, I've found raspberry leaf has helped massively. Don't get me wrong, it's not a cure for endo and doesn't replace other treatment, but it might help your pain ledvels until you get the treatment you need. I take tablets and drink the tea all month long and my period pain has gone from feeling like I'm in labour, curled up in a ball, sweating, almost vomiting, unable to work to painful, but manageable if I keep on top of the pain relief and I don't have to take time off work anymore. Just a thought...

With the work situation, could you give ACAS a call? I've called them in the past and they're pretty good. Or could CAB help?

Just ideas really... It's a crap situation you've been left in because I think if you had a diagnosis you'd have more protection at work.

Take care and keep your chin up - you're gonna get through this.

Keep posting and asking for help

Lots of love

Gwenx

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Hi Gwen,

Thank you so much for your message.

I just googgled it and saw holland and barratt sell the raspberry leaf so will get some today. Is it just a tea?

I have a job interveiw on weds and meeting the new manager on monday, Im hoping i get the job. I only have to give 4 weeks notice as well so will hopefully be out of my current role soon. Im hoping my health wont go against me though. I'm a nurse and our sickness episodes are taken pretty seriously. Occy health recommended a hot water bottle or a hysterectomy... seriously. THe new manager has a reputation for being really nice and very fair so fingers crossed. I dont think I have ever been so unhappy in a job.

Fingers crossed teh raspberry will hep me too! i hjust read an article that some people swear by it during labor! So sounds like a good shout to me!

Thanks so much for all your messages and support, its so easy to feel lost and alone when going through all this.

xxxxxx

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Wow, don't know what to say about your Occ Health! That's crazy. Thank God

Yeah I get the tea from H&B and I think H&B do tablets, if you want to top it up or don't like the tea.

I hope you get the new job and your new manager is more understanding.

Let us know how you're getting on.

Gx

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Hi Gwen,

Just an update as your messages were so so supportive a few months ago.

I left my old job with my bully of a manager behind and am now working less hours (still 38 a week) and have a very supporting team and manager around me. My pain has been SO MUCH BETTER since i left my old job, i didnt realise how toxic the bitching was but once I left I felt like a weight had been lifted. I also had 3 weeks off between jobs due to annual leave I was owed so read books, drank fancier wine than usual, got my hair done, went to spain for a week with my partner and just refreshed myself before stating new job.

Unless I get cancelled due to the recent NHS cancellations in the news, my lap is on 11th Jan (nxt week!) and then my consultation appointment afterwards (the apt i was given origionally) is the 25th so i have a follow up kind of by accident.

Changed pill which actually helped, although i have about 3 - 4 periods a month, its only the main one that is bad and i have only had to take 3 days off work sick since august - massive improvement.

I went out yesterday and bought peppermint tea, new PJs a nightie and some books in prep for my op next week. What a difference a few months make!!

My bf and I have also just moved into our first house together (lived together for years but just bought - at last!) so life is so happy and better now. Thank you so so so much for your support, I was so low and in a bad place in my last job.

I hope you are well - happy new year! xxxxxx

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Sounds horrible. You need to get those periods stopped short term so you don't have the stress and pain every month. Visanne stops period really well and didn't give any side effects, or a mini pill. It's a horrible situation. I'm at my wits end with it myself. Xx

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I could be wrong, but I didn't think Visanne was available in the UK?

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No, you are right. They've just started me on provera 30mg. I prefer visanne though, I wasn't getting any side effects. Weird you can't get it here.

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I'm going to research Visanne in a sec - I work in pharma. Is it available in other European countries?

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It was prescribed to me in Singapore. I believe you can also get it in Europe but expensive. I bought some in Italy when I ran out when travelling.

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Re NHS versus private, I've just looked into this too. Went to NHS accredited endo centre in Maidstone, great service and quality of care but very long waiting lists on NHS.

You can see the surgeons private which makes it quicker a consultation and ultrasound around 400 and surgery several thousand.

Hope this info helps. If you have private health care it may be possible. X

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My bf has priovate cover, he is going to get the info for me to see how i can be referre when he is back in work on Tues. Thanks so much for your replies, I will mention the drug to my GP when i see him this week.

Thank you all so so much for your messages xxxx

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Turns out private cover didnt work for me as we arent married, but got a speedy ultrasound and was "fast tracked" for surgery which is happening next week. Thank you so much for your suggestions xx

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Im so sorry this is awful , i came out my first gynae appointment the same ,it was a man he didnt have any sympathy but i now have a lady gynae who says 70% of her client are endo related so hopefully should have some luck.

A ultrasound is pretty useless aless u have a cyst or fibroids as endo does not show so u must insist on a laparoscopy which will show everything and they my deal with it to whilst in there!

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Yeah, I assume they do an U/S to rule out other conditions. I had an U/S before my first lap which found nothing except some fluid behind my uterus, which my endo specialist said can indicate endo and he was right. I think the key thing for Hannah is to speed up treatment and protect her job. I'm gonna do a separate post in as min.

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Firstly - you are all amazing for repying to thank you all so much.

I had an abdo ultra sound last year that showed fluid around one of my ovaries and behind my uterus a well, but was told this was nothing to worry about. I am going to have the internal scan soon, which im really worried about. My mum had it done and said t was like a giant dildo, sh regretted going on her own and said she found it difficuly to walk afterwards, so im going to take my bf with me for that when the appointment comes through. xxx

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