Does anyone think I may have endometriosis - Endometriosis UK

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Does anyone think I may have endometriosis

princessk09
princessk09
23 Replies

Hi my name is Katie and I'm 18 years old. I really need some help as I think I may have endometriosis.

I have very painful periods and heavy, painful cramps, shooting rectal pain during period sometimes if I sit down, constipation and diarrhoea whilst on period, constant dull ache in lower stomach all the time with the occasionally shooting pain on my right side.

Frequently urinating and sometimes have blood in my wee during my period. Sex is very painful for me and I'm constantly bloated, headaches, nausea and fatigue

I had an ultrasound but it came back normal so now I have to see a gynae.

Does anyone else think it may be endometriosis

Sorry for the details but feel free to ask any questions

Thanks xx

23 Replies
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tinkerbell971

Hi there I'm 19 and I am getting the exact same symptoms as you and my doctor thinks I have endo. I've got my diagnostic lap booked for Wednesday so hopefully I get an answer then. Go to your GP and ask for a referral to a gynaecologist and see what they think x

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Char11

Hey Katie, I'm 22 and got diagnosed with endometriosis this year by laparoscopy even though my ultrasound was normal. When you go to gynae try and bring a pain diary, period diary and a list of your symptoms and all the questions you want to ask about pain management, hormone treatment, getting a diagnosis etc, and try and get advice on each symptom like your bladder issues, bloating, periods etc. This way you should come away feeling more reassured. You could also ring the hospital to try and find out the approx waiting time for an appointment so you know when to expect it roughly. I hope you get the answers you need soon, Charlotte xx

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princessk09
princessk09
in reply to Char11

I've wrote down my symptoms which is quite a long list and if I need a laparoscopy, I'm so nervous about that as I've never had surgery before x

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Char11
Char11
in reply to princessk09

Bless you, honestly you are doing great :) take care x

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LISaprag

Did u have surgery

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princessk09

Yeah I had surgery last July but my symptoms came back pretty much straight away, I then went through temporary menopause this year but my ovaries are wrecked now and covered in cysts xx

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LISaprag

Sorry to hear that how old are u may I ask did u get put one anything for pain

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princessk09

I’m 20 and I’ve tried so many painkillers in the last year but nothing seems to help me

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LISaprag

Have u tried any bc

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princessk09

Yeah I’ve tried the pill twice, mini pill, zoladex (which was menopause), and the injection

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LISaprag

What was the mini pill like for u

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princessk09

I was bleeding non stop on it for about 6 months until I came off it and was still having constant pain

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LISaprag

I have a bleed light bleed every 2 weeks with pain sometimes pain is barable at times and get bloating I’ve been on it 6 months now doc says give it a little longer but I’m thinking of stopping it don’t know if I wanna coil and I’m worried to have a lap so many people say it comes back and u get more pain from adhesion from the op trying to manage the pain till I go into menopause naturally but I’m only 43 so hoping come early what mini pill was u on did u have any other symptoms when u said u bleed constant was that every day was it light

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princessk09

Sometimes a lap can help stop pain for years but an endo specialist is a lot better than a general gynae as my consultant is so clueless and lied to me after the surgery. Some days it was a light bleed and other times it was heavy like a period

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Tia1991

Hi there I can't say for sure but I've had endo and had the pains your describing apart from it was all on my left the op if you need it is nothing to worry about i worried myself stupid as i had no one to talk to but the recovery was quite fast. I have had 4 ops . Hope you get the help you need.

Take care

Tia xx

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princessk09
princessk09
in reply to Tia1991

Thank you, I've got to wait around 6-8 weeks for a referral at the doctors but I keep having a dull constant ache in my lower stomach and after eating xx

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Tia1991
Tia1991
in reply to princessk09

I really know how you feel all I can suggest is to take it easy and fingers crossed you will get some kind of diagnosis so you can start getting to the bottom of it and working on getting better. I'm not going to say think positive coz there is nothing more annoying than people saying that to you all the time. xx

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laura-20

Your symptoms sound very similar to mine. That rectal pain is the worst, isn't it! I could deal with the horrendous cramping and exhaustion, but that was unbearable!

I'm now 29, but I've had suspected endo (and all the pain) since I was 14. After years of doctors telling me to "just stay on the pill and take painkillers", they finally did the laparoscopy because we've been trying to conceive for nearly 2 years. It was my first surgery too and I was so nervous, but it was nowhere near as bad as I was worried about. On a scale of 1-10, the worst pain I felt was probably around a 6, but it usually hovered around a 3-4 :-) The first few days are uncomfortable but you feel significantly better each day. I'm sure you will be fine!

I've had a lot of success reducing my symptoms in the last 2 years though - I hardly even need to take painkillers most months now, when I used to basically live on them for 3-4 days! I use magnesium (spray and powder), collagen, a couple of other naturopath prescribed supplements, plus try as much as I can to stick to an anti-inflammatory diet. The best and most pain-free I've ever felt is when I was following a program called the AIP (auto-immune protocol), but even just removing conventional dairy, sugar and wheat as much as possible makes a massive difference. I wish I'd been told how much diet and supplements could help when I was younger, so if it's at all possible I would recommend seeing a naturopath as well as your doc or at least looking into it yourself :-)

Good luck with everything! xx

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princessk09

Thank you. Just curious but where about did you have endometriosis.

The rectal pain can be so bad, I can't even sit down for a while.

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laura-20

It's most severe at the back of my uterus, in my pelvis, and on the right side of my stomach. They don't think there's any actually on my bowel (have to have another scan to confirm), but there's so much in my uterus near my bowel that they think it's irritating it.

Ohh I know, it really sucks :-( I've developed ways of dealing with it over the years, but I've spent many hours curled up in bed or on the toilet crying from the pain, and had so many sick days because I couldn't even walk properly. I've found squatting helps, as well as pushing into the pain (seems counter-intuitive but it works for me).

Magnesium and cramp bark supplements also help a lot. I seriously can't recommend an anti-inflammatory diet and supplements enough though - I still get some pain, but hardly any rectal pain anymore, unless I've been eating really badly!

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princessk09

I had an ultrasound scan but it came back negative. But I've heard that endo sometimes doesn't show up on ultrasound scans.

I had a trainee doctor last time I went so she didn't know much or say much, just that I have to wait for a referral to a gynae but it's starting to irritate me and affect me in my career

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laura-20

Not much showed on my ultrasounds / scans either (and I've had a lot over the years!). That's one of the reasons they were so surprised to find so much when they went in. Mine is mostly in hard to see places though.

I hear you! It really does affect your life so much!

How long before your gynae appointment? I'm in Australia and it took another 12 months on the waiting list to have my laparoscopy once I'd seen the specialist, but hopefully it won't be that long for you!

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princessk09

I'm not to sure, they said wait 6 weeks for a letter but I was waiting 3 months for an ultrasound scan

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