WTF is going on in my insides?

[NoisyBrain]

Not sure what I'm looking for here tbh, maybe somewhere to get this off my chest, or help in obtaining a grip

Just for background: I've been having a whole host of peri symptoms for 18 months - 2 years now (am 46). I have a Nexplanon implant, and I've always had irregular bleeding since getting the first one put in around 9 years ago, so I haven't a clue what my natural cycle is anymore. My 'periods' such as they are, are generally lighter and shorter, but are definitely getting closer together and more painful lately. I'm up to date with smears, the most recent being early March.

Sometime in October I had a sudden, sharp, throbbing pain in my lower left abdomen, which passed after a minute or two. I then had mild, dull pains in various places on the left side of my abdomen, which came & went for a few weeks. For the last week or two things have escalated. I've had almost constant period-like pain, more so on the left side and sometimes also giving me some sciatica/butt muscle pain. One night I woke up in the early hours and suddenly had a really sharp pain running from the left of my navel down to my pubic bone, which passed after about 10 minutes.

Alongside all this, I just feel generally yuck, with occasional bouts of rage and irritability.

I had blood tests before Christmas, which all came back as normal. I think they tested thyroid, liver and Ca125 (though I read on here that the Ca125 test is not reliable, which scared me a little )

I also had a test for bowel issues and that came back clear.

I am now waiting for an ultrasound appointment and trying hard not to think about ovarian cancer. I know there are other things it could be - it just feels like there's so much 'going on' in my belly, I'm constantly aware that things don't feel 'right'.

Can anyone relate to my rambling above? (well done if you got to the end of it!)

[PerfectlyPortioned]

Urgh hormones. I can't help you with what's going on (though have major hormone issues myself that cause all kinds of weird symptoms) but I just wanted to reassure you about the CA125. You're right, it's very unreliable in premenopausal women but that's because it kicks out lots of false positives - if your ovaries are unhappy for ANY reason it can come back positive - it isn't known for false negatives, so I would say the negative result is good news 😊.

[ScribblingPixie]

I had similar pains, OP, so feel for you but it needn't be anything too awful. From my ultrasound it turned out I had an endometrioma in my left ovary. It was observed for a year then no further treatment required and I don't really feel it now. Try not to worry (easier said than done I know).

[NoisyBrain]

Bless you both, thank you. I feel calmer now
Feeling intensely emotional is of course another delightful peri symptom (I even cry at adverts these days!).

[Anne1958]

OP,

I was recently diagnosed with stage 1A ovarian cancer and my Ca125 results were all at the low end of normal and having now joined 2 OC forums it’s sadly very obvious that the CA125 test frequently gives false negatives as a result even when cancer is quite advanced. Not that I’m suggesting you have cancer. Just pls don’t delay getting to the bottom of your health concerns based on your blood test results.

I’ve just been through hell on earth after being lulled into a false sense of well being based on my test results and I don’t even require treatment apart from the debulking surgery I had that left me filleted and gutted like a fish. I’m one of the only 15 per cent of women who have a stage 1 diagnosis and though I’ll have check ups for 5 years my chances of a reoccurrence are very very low.

The bottom line is that the only way to be absolutely sure a person doesn’t have OC is for it to be looked at under a microscope.

If you like I can direct you to the forums I’ve joined so you can ask about the CA125 yourself.

[NoisyBrain]

Just by way of an update, I had the ultrasound - external and internal - and I'm none the wiser!

They found no cysts, no endometriosis, nothing. In my follow up telephone appointment the doctor suggested that I make an appointment to have my cervix looked at, because I mentioned that sex is sometimes painful, but other than that it was a bit of a shrug of the shoulders (well, not that I could see her shoulders) and call us if the pain gets worse kind of thing. Not sure where that leaves me really...

[AttilaTheMeerkat]

Endometriosis is not readily detected on any type of ultrasound scans. I’ve had more of those than I care to mention and none of them detected the endometriosis present within my uterine cavity. The usual way endo is diagnosed is by laparoscopy which is a keyhole surgery op.

I would push for further investigation, you ought to be seeing a gynaecologist.

[NoisyBrain]

Thanks Attila, yes I did have at the back of my mind that I’d seen posts on MN about endo not being picked up on ultrasound. Nearly mentioned it to the doctor, but I find phone appointments really crap for getting things across in the right way. All I could think was they must hate being told ‘someone on the internet said...’

I’ll make the appointment for the cervix check so I can at least then speak to a doctor face to face and discuss my other options.

[Kel9]

I can relate!

I’m like this on the progesterone only pill makes me bleed continuously and gives me mega symptoms of pregnancy. I’ve had enough and this week come off the pill completely no more hormonal contraception for me!!!

[Lovemusic33]

OP, I just started a similar thread. I am in bed crying with the pain on my left side, have been to tie gp so many times, have had ultrasound and found nothing and am having a hysterocopy (sp) in a few weeks to look for endometriosis or anything else sinister. I have totally had enough of the pain and feeling unwell, am constantly bloated and have very heavy long periods. Im hoping I don't end up in hospital today as the pain is so bad ☹.

[SatsumasOrClementines]

Absolutely sounds like endometriosis.

yes I did have at the back of my mind that I’d seen posts on MN about endo not being picked up on ultrasound. Nearly mentioned it to the doctor, but I find phone appointments really crap for getting things across in the right way. All I could think was they must hate being told ‘someone on the internet said...’

It’s not just ‘someone on the Internet said’ it’s all research that says, it’s endometriosis charities that say, and it’s gynaecology consultants who say. It is fact.

GPs are woefully under educated about the condition. Push for a gyne referral, preferably one experienced with endometriosis (as some gynes are a bit shit about it too).

endometriosis-uk.org/

[SatsumasOrClementines]

@Lovemusic33 what pain released do you have?

[SatsumasOrClementines]

relief*

[SinkGirl]

It also sounds similar to my symptoms with endometriosis and adenomyosis. Bowel symptoms are common too. Please go back to your GP and keep pushing.

[Lovemusic33]

[quote SatsumasOrClementines]@Lovemusic33 what pain released do you have?[/quote]
Im taking ibroprofen and paracetamol but its not really doing anything. Had the same pain last month when I ovulate and ot lasted a few days, im now on day 2 this time around but its much more painful. The pain in my back is just awful and making me feel sick.

[SatsumasOrClementines]

Oh bless you @Lovemusic33 that sounds awful.

The next over the counter step up from paracetamol and ibroprofen is co-codamol. Pharmacies also often sell TENs machines which some people find are a good pain relief option and might work well for you. (Or you can order one on amazon.) Can someone get to the pharmacy for you today?

Get yourself a GP appointment to talk about prescription pain relief. Instead of A&E, if it gets too bad today call and ask for an emergency appointment or call 111 and get an out of hours one this evening. An out of hours GP can prescribe you something very strong like oramorph(morphine) just as they’d give you in A&E.

In the meantime try alternating hot and cold compresses. An frozen ice pack on your lower abdomen may feel like the last thing you want right now but as endo is an inflammatory condition they really can make you feel so much better. Don’t be put off by the cold; wrap it and a thin tea towel and give it a go.

[SinkGirl]

There are some much better things you can buy OTC.

Paramol is paracetamol and dihydracodeine.
Syndol (if you get the right version ) is paracetamol, codeine and an antihistamine that works a bit like a muscle relaxer - very good for pelvic pain.

Obviously only one of these at a time.

Buscopan is available which is an antispasmodic and usually used for IBS but helpful for bowel symptoms related to gynae issues and helps a bit with cramping too.

Definitely go back to your GP but these may help while you wait.

[SinkGirl]

Oh and my electric heat pad is my best friend.

First day of my period today and I’ve taken morphine, naproxen, paracetamol and buscopan - still really struggling. So I know how awful it can be.

[Lovemusic33]

Wish I could take codeine, sadly it doesn't agree with me. I do have tramadol here but it knocks me out (last resort).

The hot water bottle is helping more than anything. If im still in pain tomorrow I will call my GP for something a bit stronger. The thought of going through this every month when I ovulate as well as the cramps and heavy periods just makes me feel so down, its been going on so long, the pill stops the ovulation pain but makes me bleed non stop, gp wants me to try the coil but im not keen on the idea.

[lazylinguist]

Reading with interest. I've been having abdominal symptoms since October. Blood tests showed I'm anaemic, but nothing else, bowel screening came back normal. Mine is left lower abdominal pain, radiating to whole lower abdomen, lower back and sometimes buttocks. Occasional bloating. It's regular but comes and goes. I assumed it was digestive/bowel issues, but now I'm wondering if it could be endo. I'm 49 and am not menopausal yet but periods are getting longer and heavier.

[Wasabiprawns]

Has anyone mentioned adenomyosis? The symptoms sounds very similar to mine. It comes and goes and your age puts you in the most likely bracket. They used to say that those who have had abdominal surgery (including caesarean) were most likely to have it but doubts have been raised about this in recent years.

[lazylinguist]

Hmmm. I had surgery to remove my gallbladder a few years back.

[SinkGirl]

@lazylinguist

Hmmm. I had surgery to remove my gallbladder a few years back.

Surgery can cause adhesions which can cause awful pain. Endometriosis also causes adhesions so the symptoms of adhesions from surgery and symptoms of endometriosis can be similar and hard to separate without a proper investigation via laparoscopy.

For 10 years I had the most horrific bowel symptoms - within 20 mins of eating anything I had crippling pain followed by diarrhoea. I went for excision surgery with a specialist and he removed extensive adhesions from my bowel and the symptoms disappeared overnight. They stayed gone until after my caesarean ten years later so I think I have them back again.

[Lovemusic33]

My gp has just prescribed me Diclofenac for a few days, I’m day 3 of severe pain but it’s beginning to ease. Gp thinks mine is probably linked to endometriosis but hopefully I can get that conformed next month at my gynae appointment.

[NoisyBrain]

Oops, I missed all these latest replies.

Sorry to hear others are suffering

Haven't got round to making the cervix check appointment yet, but in the meantime I've been making a mental note of what symptoms I'm getting and when. Funnily enough after saying in my OP that my periods have been getting closer together, I now haven't had one for 5 weeks! Still getting mild to moderate abdo pains.

@SinkGirl that's interesting about adhesions - I had a c-section in 2013.

[NoisyBrain]

OK, an update (whether anyone wants it or not )

Had my cervix checked, all fine as I suspected it would be. I've now been referred to a gynaecologist, hurrah! The (frankly awesome) doctor said she'd addressed the letter to the department head at the hospital, who also happens to be one of the country's leading endometriosis specialists. At least I'm 'in the system' now.