Information gathering

[xnanookx]

...I have worries that may or may not be reality, maybe I'm being overanxious and I'm finding a problem that isn't really there...any information you can give me regarding the overall picture will be greatly received as I'm just looking for pointers to help my research into it.

Here's my thought process; a few days ago I noticed on my pad that I had some strange spots, they were perfect circles and not red, they were kind of chalky white coloured in the centre and kind of caramel/light brown outer ring, the size of oooh a 10p piece. I've never seen anything like it, they were high on my pad too high for them to have come from my bum I would have noticed and felt had my underwear slipped that far back. I've not seen them since. 

This morning I woke up and went the loo as per and although I hadn't bled so much over night, it was dark blood but the underlying shade was even darker and to one side, it was very strange I'm struggling to compare it and I thought hmmm that's strange...

My physical appearance (down there) has changed over the last couple of years, the bit between the holes has kind of ridged causing my vaginal opening to be extended and pulled back closer to my back passage, in turn the passage is protected by the ridge and creates a deep kind of crater effect into my back passage. Occasionally the ridge flattens out slightly and when this happens it kind of sinks inwards and my openings are only millimetres apart. It doesn't stay like this for long before the ridge comes back. It isn't painful in the PAIN sense but it does ache sometimes. It doesn't effect (performance) either sometimes it tugs...

My MRI and Lap revealed my right ovary attached to my rectum, I have 2 nodules, one is attached flat surface to flat surface with my ovary and the nodule is the reason my ovary is stuck down there, they are perforating deeper into the rectum and close to reaching muscle. The other nodule is slightly higher and its the opposite side as the other one and inside my passage causing a restriction. This one has perforated the muscle and is close to breaking free and becoming trapped inside the entire wall poking through each side. They are both practically identical and both pose the potential to rip a hole in my bowel.

This morning after being up about 10 minutes, I'd already had my wee, I just sat down and I got the most awful spasm in my bum, it passed in seconds and then I had a lingering pain from one or the other of the nodules, not my ovary they have a very distinct sensation when they hurt. This pain was accompanied by the pressure of my waste pushing down about 4/5 inches above my actual opening.

Here's where I began to panic a bit...it felt like I needed to poop from my Mary, from the back wall, the closest bit to my bowel. As you'd expect I managed to get to the loo, doubled over with a stinging sensation in my outer genital area (usually its just my back passage) 

I've noticed my movements have been dryer, harder, and more broken up than they used to be. Old poop taken a long time to work its way through my digestive system, a constipation poo I call them.

Here's where my mind was racing I don't know what to make of this...

I went and it was OK not too painful just felt a bit raw round the actual hole the ridge was up and its pretty pointed its practically sharp when I'm ON the loo. I wiped and as most women do its two swipes, backwards and forwards as my mummy taught me. During my period I like to go forwards first and I just dabbed my clots have been pretty bad, first touch revealed...I'm so sorry if this is too graphic but I really need the advice...my first dab over my vaginal opening revealed blood to the other edges and the interior circle was slimy poo it appeared to me that it had been expelled from the front and not the back...this happened a few weeks ago too again on my period but the pain was just classic movement pain. 

Neither episode has panicked me enough to say I need to go to hospital, am I reading too much into this???

[mylady77]

I don't know any answers but I too have great confusion, and worry, about what's coming from where, and not much of a gap between everything.

I currently have a diagnosis of adeno and adhesions between uterus and bowel - awaiting a lap to find out exactly what's going on.

You aren't alone with such concerns anyway.

Best wishes x

[xnanookx in reply to mylady77]

My lap was done by a general gynae so my diagnosis, for me, is still just provisional, my next op I'll have a bsge specialist, urologist and colorectal surgeon (i think that's his title) only after this op will what they say hold any true significance with me. 

My mind is working overtime today it took forever to gather my thoughts and attempt to get it all documented and making sense. 

These doctors, its a game to them they don't have to face the consequence of their lack of action. After the lap the general gynae team had a complete breakdown in communication and failed to provide any of their findings. I only got given a stage and diagnosis when I argued with my gp for a referral to the endo clinic. I met the actual specialist and not just an underling his first words when we walked in where sit down you need a major operation...

Self-diagnosis is a dangerous game but I feel like if I can find the right combination of words to search for somewhere I'll find my symptoms and a name and it'll put my mind at ease. I'd rather have a worst case scenario setup than be totally blind and have to put my trust in people I don't have any faith in xx

[mylady77 in reply to xnanookx]

I'm off to see the GP tomorrow to ask/beg/demand to be referred to a BSGE centre. My gynae is proposing to do a diagnostic lap but because the adhesions suggest RV endo she wouldn't be able to treat me. It makes me furious that she was proposing to open me up just to confirm something and then would have to send me to a specialist team anyway for treatment which would mean another op.

So you're right, it's hard to maintain faith in some medical professionals.

My dog gets better treatment at the vets!

Finding the right words to communicate levels of pain and symptoms is difficult. I sometimes wish I'd studied semantics and the language of pain, it's fascinating.

You seem very articulate when writing - are you the same when you speak directly to your doctors? I'm terrible. I might start handing letters over, 'Dear Doctor...', if I didn't think it would annoy them all so much.

Hope your op is successful and you get the full story this time!

x

[xnanookx in reply to mylady77]

I wrote a letter for my bsge Dr I saw in Feb I found my letter was worded much better than I was able to do in a sit down convo. I will be using this approach with the hospital from now on. The specialist was lovely he took my letter, read it and filed it into my file. My gp is a different story, they I doubt would take very kindly to a letter especially if I was able to capture just how annoyed I am with them. The appt with them are usually the cause of my stress, they don't have a basic understanding of the condition and they don't even bother trying to understand me as a patient, its insane how they can go through their career with massive black holes in their knowledge, I'm sure we as a collective aren't the only illness ignored and misunderstood my mum in law has Lupus luckily enough she has treatment at the hospital her gp literally just fills prescriptions for her. I wish my gp would take the same approach! 

In regards to the gynae I agree I wouldn't let them do it hun, go and get the appt at the clinic your gp cannot say no. Then I'd write the start of a letter and just keep working on it until it says exactly what you want to say. I wrote the same letter 3/4 times before I was finally happy. The specialist will appreciate the personal touch and just like I did I just said I thought it may have been an underling when I wrote it but since I wrote it to YOU it pretty much covered our convo today, I may have missed some bits so take the letter I wrote it and its pretty personal to ME and YOU. He smiled and said not many people bring me a letter its fascinating and offers a bigger insight to you as a person I feel I can relate to you on a personal level having read it. 

I find writing so much easier than speaking often I get agitated and lose my train of thought. The world would be a better place if we lived inside a book, we could write ourselves a happy ending xx

[xMMx]

Hiya,

I get the same too, and sometimes can't work out what is from where. 

The day before my full bleed (day1) I can bleed from back end, but it's different to bleed from front, a different colour and consistency. Then when period is in full flow and bright red I get constipated poops along with mucus and a constant feeling of needing to go and it's excruciating.  I've also recently started with the stinging botty hole and feels like I'm trying to push something out that's not there - very confusing. It's such a relief when I have a normal poo!

You are defo not alone.

One thing I would suggest tho is its prob not good to wipe forwards, I always thought that's how you pick up UTI's if you wipe from bum to front way - it may be an old wives tale but I've always wiped backwards only.

I don't follow the endo diet but I do try to restrict gluton and dairy as much as poss, I try be good weekdays then treat my self at weekends, i eat lots of fruit and veg, I go to the gym regularly - I started doing this a couple of years ago and find it helps massively with daily pain, it's even meant I don't have to take as many pain killers as I don't think they were helping my gut.

It's hard enough having this awful disease let alone wondering what's going on with your body, reading into every little symptom.

Try not to let it overcome you as stress/panic won't help (easier Said than done!)

Be kind to yourself.

MMx

[xnanookx in reply to xMMx]

The bum pain can by far the worst of the symptoms you get, it doesn't respond to anything, painkillers, positioning, nothing works its like a 5 inch dagger set on fire and inserted into you bum hole, these spasms usually make me cry, they are the only thing that reduce me to tears these days.

What type of gym work do you do? I walk for miles but I feel like that's not enough, I don't really have friends I could go to the gym with so I've not really entertained the idea properly, I want to try yoga but I feel a bit conscious going alone, that's insane isn't it I'm 31 lol xx

[xMMx in reply to xnanookx]

Yes you describe it spot on!!

It almost feels like I'm peeing on an open wound kind of sting but up the bum - awful!

I do the classes in the gym, I like the short half hour ones so I'm in and out. They are quite high impact but I get the instructor to show me easier moves so I'm not overdoing it.

My back hurts if I walk for long periods and  I feel I get tired really quickly. It's bizarre how different things work for different people.  It's a shame coz my hubby loves to walk but I just can't do it.

You should defo try yoga if you want to, it's quite low impact and have heard it's really good, I've only ever tried it on the wii, maybe you could find something on YouTube and try it at home to see if you like it before committing to a paying class.

I'm not mad keen on going to the gym on my own, I go with my mum.  Before my op in Jan I used to do a class called abs blast, done it once since my op and was in agony for weeks afterwards so trying not to overdo it on the stomach classes.

X