Endometriosis UK
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Continuous Endo pain, Bladder problems from the pill?

Hi everyone!

Im new to the site so I apologies if i do anything wrong.

I was finally diagnosed with Endometriosis near the end of 2017 and have finally gotten to a Gyno in Feb 2018. Before jumping straight into surgery she opted to try and manage the pain with the Levlen pill. I am also to skip all sugar pills in an attempt the stop bleeding completely for awhile. I have only been taking this for almost a complete month now but my pain isn't fluctuating as usual.

My pain is always on my right side, back, and cramps in the centre. Though for the last two weeks I'v been having the exact same pain on the exact same level non-stop. My right side pain is the worst of it just being very persistent. Its also getting cold here so sneezing has become my worst enemy. I have also been having menstral like cramps the whole time as if my uterus is trying to bleed but can't even though without the pill I'm due to bleed next week (sorry tmi).

Also emptying my bladder has become a challenge. Theres no pain but I never feel quite finished and when I do go I have to keep pressure on to get it all out, If i let go of the pressure it'll stop and theres no starting it again ( sorry tmi again).

Its at the stage I would far rather sleep away the day to get some peace from it (if it doesn't wake me up). On top of the many appointments I have and University study everything has become a living hell. I'm very behind.

All this may have nothing to do with the pill.

Just looking for advice in general really.

Has anyone gone through something similar?

Should I be concerned or attempt to get a GP appointment? ( She's probably sick of me at this point XD)

Sorry for the novel its nice to find somewhere to talk about it all.

Thanks in advance!

6 Replies
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Hi there. I have just joined this site this morning too! I have joined this because endometriosis is such a lonely condition and I'm struggling to get my head around it.

Last Monday I had a laparoscopy where they removed an 8cm x 6.5cm cyst from my right ovary. They drained it and peeled it off of everything it was sticking too. I'm still recovering from the surgery the now. Feel quite battered and bruised inside but getting there.

Since last Aug I suffered right sided pain, sometimes I was doubled up and my husband Would take me to hospital. I finally met a fantastic surgeon who helped me and diagnosed with with endometriosis plus the endometrial cyst. I had constant discomfort and as the cyst was pushing in my bladder i was constantly in the loo. Never feeling that I had emptied my bladder. If inwas you I would ask for an ultrasound and get checked out. It may be nothing like I had but worth checking.

Hope your ok. I know how exhausting it all is xx

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Thank you for you reply! Xxx

Iv have several ultrasounds all completly clear and normal. Not going to lie, I cried when I got the results.

It's so lonely and I get criticised a fair amount in my household. Simply from the lack of evidence. So glad I found this site.

My next Gyno appointments in May, so I'm just going to have to put up with it all.

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I really hope you get sorted out. Its so draining!!!! I'm glad I found this site too. My friend has suffered endo for years and now I can 100% sympathise xx

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I just joined today too.

I've had endometriosis for about ten years as far as I know.

For the most part that is pelvic pain worse on one side, a feeling like some one has stuck a burning rod up on my cervix, and irritatingly, bladder symptoms. Often the bladder symptoms are worse than the pain , urgency, frequency, and I used to get difficulties with flow when my pain was severe before the last ablation.

It sometimes seemed like the bladder wouldn't relax and the stream was thinking, or I had to really push to get the urine out. It sometimes felt like I had cystitis and my bladder would spasm after emptying. They thought I might have 'interstitial cystitis', that is, chronic and non infective cystitis.

I had a cystoscopy under a general where they tested the capacity, the muscular walls, the urethra to make sure it wasn't strictured, and a biopsy

All normal they said.

That's when they sent me back to Gynae, and said it was the Endo again.

Last laproscopy I had they said there was a 'nodule' on my bladder they couldn't burn fully off. It might be the cause. But I feel most of my pain on the right but my nodule is on the left. Who knows!?

The last surgeon I saw (I've now moved to Australia from the UK) doesn't want to touch it to excise it for the fear it might puncture my bladder wall if they do.

My UK surgeon said if it gets bad he'll cut it out. I think the UK is more up to date with treating endometriosis.

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Stream thin not 'thinking' I meant.

Endometriosis is such a misunderstood condition, and often it is irritating, right up to debilitating. So many women suffering it and it seems that it can be quite individual how it affects people. Sorry it's got you too!

All the best xx

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Thanks for replying xx

Yes I have similar issues the burning rod feeling I'v had for years! That's what really made my doc raise an eyebrow, with no sign of infection or anything she just shrugged and send me out the door years ago. Was nice to finally put a name to that aswell as everything else.

But yes it's insane how misunderstood it is even to docters, it's ridiculous really. Too many have to put up with it and it's just not on. Here is Aus it's awful.

Anyway, I hope this site finds you well and I hope you are doing well yourself xx

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