Can I have some advice on what to do next? - Endometriosis UK

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Can I have some advice on what to do next?

Chloes161290
Chloes161290
6 Replies

Hey,

I had my first laparoscopy 3 1/2 yrs ago I’m almost 28 this month and have been experiencing UTI like symptoms which I’ve been referred for scans on my bladder, deep down I know it’s my endo and I wanted info as I’m considering going private for a consultation and for these bladder scans. If these scans come back clear how do I go back to the GP and get back on the list for gynae?

Sorry hard so explain but if I’m still in pain and if these bladder scans are clear etc cos I know endo doesn’t show in scans, how can I be taken seriously, it’s so upsetting, I’m literally scared to have sex now and they have tried telling me it’s urethral syndrome yet the tablets I have for that don’t work!

I’ve never gone down the private route before can anyone explain to me the process as I’m clueless.

Thank you,

Chloe

6 Replies
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Martha79

Hello, sorry to hear your struggling. If you ring your gp surgery and explain you want a referral for a private consultation they should be able to do it for you. Do you know what consultant you want to see and at which hospital?

I am in a similar situation my gp has referred me to gynae on Friday but there is a long waiting list. I’ve decided to request a private appt with a consultant I seen previously. I have just rang the private hospital today and got my appt for the 20th Dec. I have asked my surgery to fax my referral over which they have agreed to do. I’m not sure what your circumstances are but in the past I have been allowed to have follow up treatment on the nhs after my initial private consultation.

Do you mind me asking what uti symptoms you have been experiencing? I’ve been treated for a uti over the last 3 weeks but then told I didn’t even have a UTI! I know it’s something to do with my endo but no one seems to understand or really want to listen.

X

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Chloes161290

Hey,

Thank you so much for replying. I’ve never gone private before but I was kinda thinking the same if I can have a private consultation and then go forth on NHS cos they have been fab in the past it’s just the wait.

I don’t even want to go to my GP at min cos I feel I’m a nuisance, I don’t like to take emergency appointments but I’ve been having to do that when it’s bad with this UTI like pain :(

Aww I’m glad you have managed to get an appointment privately, let me know how it goes, I don’t live in a city or anything but there is a private hospital about 50 minutes from me and I was just thinking there cos it’s close, I have heard good things.

I do have a kinda of health care cover with work but it’s only level one and my partner thinks I may be covered with him too, his level is 4, but this is minor things like scans etc rather than surgery.

Truth be told I had my smear back in October, all was well, but 5 days after I had my first UTI, I had three days worth of anti biotics, didn’t work, then went back again about two weeks later, had another 3 days, didn’t work, went again a few weeks later and I had a 7 day course of 4 tablets a day, it went (meanwhile samples sent off showed clear) they just kept saying in the GP It’s showing some white blood cells, then last week went again, he gave me tablets for relaxing the muscles, as he thinks they are cramping giving me a UTI like feeling, sample sent off clear but still got feelings of pain after I urinate (not all the time) pressure, a tensed up like feeling and like a burning sensation higher up like around my waistline, also aches like stretching tissue around the scar areas from my last laparoscopy. It’s odd like I’m also scared to have intercourse cos although it doesn’t hurt, the next day all these symptoms come back.

Sorry for long message.

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Martha79

Hi,

Don’t worry sometimes long messages are needed.

That’s good about your health cover hopefully that will go some way to help you with the cost.

The wait is the worse and I get really anxious so would rather pay for my initial appt instead of waiting months.

I have never had a UTI before but 3 weeks ago I had UTI symptoms and was prescribed 2 lots of antibiotics. I have seen 3 gps, went to the walk in centre last night and urgent care today. Only because the pain got so bad and my mum & husband made me go! I hate going to see the Gp and like you feel I’m a nuisance. Some of my symptoms are similar to yours.

When I went to the walk in centre last night the nurse I seen checked on the system & said my urine sample came back all clear over two weeks ago & I shouldn’t even have been prescribed antibiotics. She said I need to be referred to urology. I have a referral to gynae now so will have to ask my Gp for another referral to urology. I’m not looking forward to that.

Sometimes intercourse is painful for me because of my endo and to be honest since I have had these symptoms I have been a bit scared to have sex.

I hope you feel better soon and get your appointments sorted. Please let me know how you get on x

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Chloes161290

Aww thank you, yes I feel your pain, endo is horrible.

I hope you get sorted and it’s definirely worth being referred to urology as they can look at you bladder etc that’s what I’ve been referred for, I do think my problems are because previously me endo was removed from my urethra which they said at the time I may be more prone to infection :( I’m so used to UTI’s now as I’ve had them since I was a little girl. I do everything by the book to prevent them but never works :(

I know it’s easier said than done, but try not feel a nuisance, I’m starting to learn that, because we shouldn’t have to suffer or be in pain, my symptoms change all the time.

It’s nice to speak to someone who understands, thanks for sharing your experience and let me know how you get on, hoping you get things sorted xx

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Martha79

Thank you, it is nice speaking to others that understand. It’s really helped me the last few days x

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Chloes161290

I feel the same as you Martha, it hard when you don’t have people around you who truly understand, this group is fab :) x

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