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Endometriosis symptoms?

(5 Posts)
Straitjacket Thu 03-Apr-14 09:27:33

Just was wondering if those who have this could tell me what symptoms they have. I have been suffering a lot lately, to the point I was hospitalised for 4 days as I couldn't stand or move I was in so much agony. I had blood in urine, and came on a period whilst in there but they thought it was Kidney Stones but a scan came back clear. But thinking back, and adding up all the little things that I didn't think we're connected, I am now wondering if they are.

The pain spread into my hips and around into my back. I have also lost blood from my back passage (was told it was caused by Gastroenteritis when in hospital as had Diarrhoea but I don't now and it's happening again). When I did a urine sample, I could see tiny tiny bits of what looked like broken up red tissue. The menstrual blood is really dark brown and very dry like for the first few days. I don't usually get periods (got Mirena in) but getting one every month lately after a week of very sore boobs. Sex can be painful at times, and for years I have felt like there is pressure coming down as though my insides are going to fall out after sex, now also when having a period. I am tired all the time and feeling cold, even though I am the only one (driving DP and the kids nuts with the heaters being on all the time). Having dizzy spells even when lying down. Suddenly have terrible acne. I have also at times felt really sick after eating. Not actually been sick as yet though.

That's all I can think of right now. After yet another sleepless night due to pain, my brain has turned to mush! Looking on the NHS website, they don't list that many symptoms really and the ones they do could be symptoms of other things. So thought I would see what those who actually do have this go through.

Thank you in advance thanks

I was very sorry to read of your current problems.

I was originally diagnosed with endometriosis some years back, the main symptom I had was pain in the days leading up to and during menses. Had lots of new (bright red) and old (brown) blood, clots, long and dark stringey bits of blood etc. Pain also went to my hips, legs (it got onto the sciatic nerve) and rectal passage (I believe the non medical term for that which I have seen on here is javelin arse!) although I did not have any bleeding from that area. I also had stomach pains occasionally too. All this served to very much knock me flat whilst clutching a hot water bottle. Deep pain during sex is very indicative of endometriosis being present.

If you have not already done so I would start keeping a daily pain and symptom diary to show a gynae.

What sort of ward were you on, was it a general ward you were on or a gynae ward?. I would state that endometriosis if it is there is usually only diagnosed through a laparoscopy which is a keyhole surgery type op. Scans like internal ultrasound scans do NOT usually detect endo as the deposits are so small.

Have you had any blood tests done to check your thyroid function?. Being tired and cold all the time could be symptomatic of having problems with the thyroid gland.

I would ask the GP to refer you to a gynaecologist and do not take no for an answer. All your symptoms warrant further and proper investigation.

Straitjacket Fri 04-Apr-14 13:45:30

Thank you for your reply.

I was on an ENT ward, along with many others who weren't meant to be there. Many wards had been closed due to an outbreak of Norovirus. I did have bloods taken whilst in but they said nothing apart from that they didn't show up anything. My BP kept dropping rather low (was around 80/60 give or take). I assumed I felt cold because of that, but I did go the doctors yesterday and BP was now ok.

She took a urine sample and it showed I had blood in my urine again. She said that the pain is in the area where my bladder is, so probably Kidney stones. It didn't show up as an infection though so she has sent it off to the lab, and gave me antibiotics for 3 days and told me to do another urine sample to check for blood Monday. She also did an anal exam and there was no sign of blood.

I mentioned endometriosis, and she basically said it could be but it is a nightmare to diagnose without keyhole surgery so we will see what next week brings first. I just find it odd that I appear to be getting Kidney stones each month, getting blood in my urine and losing a bit from my rectum too when I am due on, and then start a period (which I usually don't get with the coil!). Plus the ultrasound scan I had showed no Kidney stones :/

Thank you for your advice, I will definitely keep a diary and demand a referral. I found out my mother had endometriosis too, only found as she had a hysterectomy due to fibroids.

What treatment have you had? Does it help or are we stuck with this awful pain? (If I do have it).

Sorry you too have gone through this. I am the same. I clutch onto the water bottle and pop whatever pain killers I can yet still in awful pain sad I couldn't even move at all for it! I hope it's eased for you thanks

So sorry you're going through this.

Endometriosis can in some cases go down the female line and it is more common than people realise.

The painkillers and the hot water bottle descriptions made me wince in recognition.

Endo if it is there can go to all sorts of places, bladder included.

I ended up with laparoscopic type surgery where the extensive endo deposits were lasered off. That did the trick although even now years on I get the occasional flare up even though the pill helps with it. Its not half as bad as it was when I was in my teens and 20s. I realise now that my problems with endo started at 14; I had such problems then but it simply was not recognised.

Do keep a diary and demand a referral to a consultant gynae who actually has a specialist interest in endo. Seeing someone like that rather than a general gynae is vitally important.

BTW www.endo.org.uk is a useful website.

Do let us know how you get on.

Straitjacket Sun 06-Apr-14 20:21:42

Thank you so much for the advice, you have made me realise I am not imagining things and I need to get this investigated!

When we last did the deed, although the actual sex doesn't cause me pain (just discomfort), as soon as we stopped, the pain started and progressively got worse. I couldn't sleep for quite a few hours after sad makes me feel like sex isn't worth it anymore.

I had terrible periods since I started aged 11. I remember being put on the pill by the time I was 12, which didn't help and I recall being put on Tranexamic Acid tablets by the age of 14 the latest. I remember heavy periods, but I don't remember the pain or whether I had any. Those years are a blare to me (I was abused and seem to of blocked those years out!)

Apart from having the kids, and each time for 2 years whilst having the coil in (before and after DS2), I have always had problems. I thought the coil sorted it each time, but I had no idea what changed last time, and this time after 2 years, to cause these symptoms. It is baffling.

I will definitely keep a diary though. And take a look at that site. Hopefully both will help to either diagnose or rule it out. I really am not happy with the Kidney Stones diagnosis though as it just doesn't add up.

thanks

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