Period hell. : I will begin by apologising... - Endometriosis UK

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Period hell.

ShazzaB90 profile image
9 Replies

I will begin by apologising for both the length and information in this post but I need advice...

For years, I have been visiting my GP complaining of headaches, bad spots, bloating, mood swings, inability to loose weight, increase in frequency and urgency in urinating, painful bowel movements, general womb aches + pains as well as pain in my lower back, hips, groin and legs.

This could start roughly one week before I start my period and will continue until roughly a week after. I am in so much pain and discomfort that the doctor prescribed me Codine.

After many appointments, I requested to see a specialist. I saw the specialist 3-4 months ago, explained my symptoms and was told it may be endometriosis or poly-cystic ovaries. (these were also suggested by my gp). The only way to diagnose was a laparoscopy.

I was booked in and had my surgery on Monday. Nothing was found but I am in pain, having spotting since the op, despite not having a period for two months before the op etc.

My doctor has gone back to the specialist asking for more details but what could it be??? I've had two external and two internal ultra-sounds... Numerous blood tests testing all conditions and now a negative laproscopy. (I know I should be happy about this but I just feel frustated!)

What do I ask for next? Is there any more options? Any help/advise would be greatly appreciated.

Thank you. xx

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ShazzaB90
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9 Replies
Littlebirdy34 profile image
Littlebirdy34

I'm currently in your position after a clear laparoscopy in March. I've had numerous bloods, urine and ultrasounds. Because I get rectal bleeding when I'm on my period I was referred to colorectal and I've just had a colonoscopy. This was clear too. I'm hoping for an MRI next and I've been referred to urology for a cystoscopy. If nothing is found that answers my pain my doctor is referring me to A bsge centre as she is convinced I have it on my bowel and it has been missed. My laparoscopy was very poor with lack of information so I also got my photos and I had a second opinion with ge eral gynea which didn't get me anywhere. From the information I have only my pelvic area was checked.

Get as much information as you can, keep a pain diary and find a supportive doctor who can jeep pushing for a diagnoses. I have all your symptoms plus a few others so don't give up xx

Littlebirdy34 profile image
Littlebirdy34 in reply to Littlebirdy34

Apologies for the errors, I swear my phone changes what I write x

ShazzaB90 profile image
ShazzaB90 in reply to Littlebirdy34

Bless you. You sound like you have it a lot worse than I do. I hope they find an answer to it all soon for you.

I did keep a list of symptoms, period dates etc just for the specialist to hardly look at it. Didn’t fill me with confidence even then looking back. Fingers crossed my gp will continue to be supportive + help me still.

Littlebirdy34 profile image
Littlebirdy34 in reply to ShazzaB90

Was the person doing yours from the bsge list? I didn't have an endometriosis specialist do my lap so I'm hoping if I end up with one another lap will show something. I'm aware that this is a long way off at the moment, my next colorectal app isnt unil Sep 18th either.

As another lady said there is something called adenomyosis so might be worth looking into. Hope you can find some relief, not easy is it x

Helephant3 profile image
Helephant3

Have they considered adenomyosis? I have it and I think a lot of the symptoms overlap.

Often doctors ignore it because it's more common in ladies over 40 or who have had trauma i.e. birth/c-section/biopsy, but I have it diffusely and I'm only mid 20s, no trauma.

Adenomyosis occassionally shows up on tv ultrasound or mri if it's bad enough but the only way to get a 100% diagnosis is by histology following hysterectomy so it's possible they've missed it.

Good luck X

ShazzaB90 profile image
ShazzaB90 in reply to Helephant3

I have never heard of adenomyosis although to be fair, I hadn’t heard of endometriosis until a few months/a year ago. I’m also in my 20’s (late) and have no children. Age is definately an issue to the doctors. I’ve been told to have children (what about freedom of choice, ahy?) I’ve been told it’s all in my head and I can be given CBT therapy, I’ve also been told I will just have to live with it. Your twenties should be a great time.... not living like an old aged pensioner because you are in pain! I’m 28 and jealous of my co-worker who has had a hysterictomy. How bad is that? Sorry for the moan! xx

NW248 profile image
NW248

Endometriosis can get missed on a lap, it especially gets missed if it is in the Pouch of Douglas (below the womb), I've even known of gynaes say that the bowel is stuck to the womb and not realise that it was endo sticking it there. So get referred to an endo specialist on the BSGE list and get an MRI.

ShazzaB90 profile image
ShazzaB90 in reply to NW248

Thank you for your reply and advice. I will push for an MRI. Isn’t it silly that the procedure for diagnosing the condition can also miss it? Fingers crossed there will be a fool proof way of checking in the future or at least a check list of every area to check whilst doing a laparoscopy.

ShazzaB90 profile image
ShazzaB90

Hi Ladies,

I need advice again. I have just heard back from my doctor.... there are no more tests available. I will just have to learn to manage it... oh... and loose weight which seems to be the doctors magic answer to everything... even the cure to a common cold.

Is this it? Is this going to be my life or do I push for something else? Is there anything else?

Looking forward to your advice.

xx

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