I am so upset and don’t know where to go from here…

[Sky342]

I went to the doctors with 3 months of pain while going for a pee, I have been on two antibiotics and none have worked. So, I made an appointment with the doctor to speak about what to do to help with the pain and find out why it was happening, or so I thought. I went in and her answer was go on the pill, yes a pill to help bladder pain? Anyway, she explained that I should go on this pill for to “dissolve endometriosis”, she told me that once on the pill, endometriosis will dissolve, which is obviously false. The main point is I had my lap in feb and was told no endometriosis was found.

I seriously am struggling so so much, I do not know where to go from here. I’m so mentally exhausted with it all. Please if anyone has any advice at all, I’d greatly appreciate it!! Thanks😊

[Rocket14]

I have stage 4 endometriosis and also have issues with bladder pain so I know how you feel. Maybe ask to be checked for kidney stone. I've recently had one removed as it had got stuck. I got kidney stone from rare side effect of Zoladex implants so I'm now having to go cold turkey until full hysterectomy.

See another doctor if you can

Keep positive my lovely lady xx

[Sky342 in reply to Rocket14]

I will look into that, thank you!! Hope you are well xx

[635703]

Hello, I’m so sorry you’re in this situation, how stressful for you 🫂

bsge.org.uk/endometriosis-c...

Did you go to a BSGE accredited hospital to see a BSGE surgeon in Feb for your lap? look on the link. These are the best and most skilled people to treat you for Endo. Moving forward make sure you have the right Dr and the right hospital.

I think you can ask for another opinion from a different Gp. They clearly have made you wobble and rightly so. I don’t know if the pill can dissolve Endometriosis or not.

However, I had a hormone injection (zolodex) and Endo was seen on MRI by my bowel but during my lap has indeed dissolved. Is is plausible but unsure if possible?

The mental exhaustion is real and the fatigue and the constant researching, and advocating. I’ve been doing this for 17 years or so since diagnosis. Our mental health is no joke fighting this awful disease!

I take Citalopram 40mg for depression and anxiety and it took the edge off the whole nightmare of Endo. I started on 10mg and kept going up. At first suggestion I was really offended and ashamed that I needed this help. Once my mood lifted it helped me be able to keep going.

So sorry you’re having a rough time of it and hope you can keep moving forwards day by day. 🫶🏻🫂💗

[Sky342 in reply to 635703]

No I did not go there for my lap. I know the gynaecologist that done my lap was not an endometriosis specialist. I will get in contact with another GP and gynaecologist and see where to go from there. It’s just so hard to keep picking myself back up again, it’s exhausting. I’m only 19 and it’s stopping me from doing so much with my life.

Thanks for replying. I hope you are well!!

[635703 in reply to Sky342]

I hear you! It is exhausting to keep picking yourself back up again and again and unfair and it stops you doing things! Totally 💯

The Endometriosis.UK helpline are brilliant at listening and I googled the opening times first and gave them a ring. Just sometimes you need to talk out how to go about getting what’s best. They don’t give medical advice but they all have personal experience of Endo.

You’re welcome! I’m not doing so bad today…in bed waiting for meds to kick in 😎🫶🏻💗 Have a lovely day x x x x

[Sky342 in reply to 635703]

Thank you💗

[Pennyheart1]

Hi, sorry to hear what you are going through. I think we would all feel at a loss if we had your experience.

Honestly - from what you have written, I think you need a second opinion, a different doctor.

I don’t think the advice you have been given has found the problem on your current results. I’m no doctor but the pain could be a few different things - endo, or severe uti, or perhaps like the other lady said a kidney stone…???

Hope you feel better soon!

[Sky342 in reply to Pennyheart1]

Thank you for your reply!! I will look into all of the things you mentioned and see. Still feeling no better but hopefully soon😞 Hope you are well!!

[Hooplove00]

ask her about interstitial cystitis!!! 🎗️💛

[Sky342 in reply to Hooplove00]

I will, think this is what I could possibly have!! Thank u for your reply💗

[Hooplove00 in reply to Sky342]

absolutely 💛 I’ve had similar ongoing symptoms and had been getting tested for UTI’s frequently. It can get so discouraging trying to connect the dots, but stay strong!

[Sky342 in reply to Hooplove00]

It sure can😞Hope you are well!!

[Hooplove00 in reply to Sky342]

thank you!

2 weeks post op and now I have a hemorrhagic ovarian cyst the size of a gulf ball😳 very painful and bed ridden.

How are you feeling?

[Sky342 in reply to Hooplove00]

Oh my!!! That sounds awful!! I hope you feel better soon and get a break from the pain💔 I’m not doing too great, I’ve been having severe back pain, and just seem to be having a constant flare up of everything unfortunately. I’m going for a job interview for the first time in 2 years, from I started to feel unwell. And the pain has just took the joy away, I don’t even want to go anymore as I just feel it’s a waste of time, since most days I’m left on the sofa with a hot water bottle and pain killers.

[Hooplove00 in reply to Sky342]

thank you!

I’m so sorry to hear that and believe when I say I’ve been there 💔 . What I’ve learned and this may be painful, but put your body first! The stress of working yourself up to even show up can be hard. I had to leave some jobs myself.

Hoping you get some relief 🫶🏾🎗️

[Sky342 in reply to Hooplove00]

Yes there’s nothing worse than having to leave work, especially with the cost of everything going up!! Thank you!!

[Hooplove00 in reply to Sky342]

you’re very welcome!