Endo.....can anyone help

[MissReginaPhilange]

Hey all. Long story as I've been referred to an emergency gynae on Wednesday for potential cancer/ endo.
Can anyone share endo symptoms with me and what sort of tests it took to diagnose and what the pain is like. I've been in agony for 2 months straight daily and have now got morphine tramadol coedine and basically every pain relief imaginable to try and shift the pain. Experience would be great

Just gonna bump as desperate for reassurance or advice or something, as the pain is sending me to quite a dark place

Hi OP. No real advice but didn't want to read and run. Cancer and endo are not the same thing, as I'm sure you know. I have endo and before diagnosis I was in severe pain, worse than childbirth. Hope your results are ok.

Thankyou. Cancer can be riled out once they've checked my cervix but the Dr is leaning towards endo...hencr my question. The pain is horrific from what I was reading people only seen to get it around cycle time but mine is constant. Is yours still awful or can they control it? Bit worried as I cant hace anything hormonal as my body can't tolerate it so looks like treatment options are minimal . Hope your ok

Hi
My endo symptoms were premenstrual bleeding/ spotting for up to a week before my period and bad period pains.
Diagnosis was laparoscopy and they lasered it at the same time. Treatment for me was for infertility and now I take the pill continuously to keep it under control.
Hope all is ok

@chrisinthemorning thanks for your reply. Did you get any bloating, painful sex? Trouble peeing or anything like that? You don't hace to answer I know they are pretty personal questions. This is my worry if it is endo I can't take any form of hormonal contraceptives so wondering how I would manage

I'm no longer in pain. I had a laparoscopy to remove the lesions and was put in continuous birth control to get rid of my periods. I then had my kids, and now have mirena. I am symptom free. The only way to diagnose endo is via laparoscopy so make sure you fight to get one if endo is suspected.

Mine started off as pain around my period but changed to pain all throughout the month. It got to the point I used a tens machine constantly so don't think your constant pain precludes endo. I have had hormonal treatment but I hated it and will never do it again. I had the endo lasered and was in pain again within 6 weeks. I had excision of the diseased tissue and had 2 years without pain. I have been able to control it with diet since then.
Google the endometriosis diet, there's a lot out there but I don't know whether you would need to be at a lower pain point for it to be effective.

Sorry to hear you're in so much pain OP
I was diagnosed with endo 8 years ago by having a laparoscopy and have pain throughout the month but it isn't constant. Mainly during sex or after bowl movements. It is worse during and after my period though and this is when peeing hurts too. I'm also very prone to UTIs which I think is related to the endo.
As PP said make sure you get a laparoscopy as it is the only way to diagnose. I'm fighting for one again now but doctors are saying it all must be clear as they can't see anything on an ultrasound.

Thanks ladies have an emergency gynae appointment so gonna demand they do something this pain is far from normal. I also have a sneaky suspicion that the novasure I had done a year ago may be the root cause of all this. Although had issues for years bleeding horrendously etc so maybe it's just reached a peak. Luckily I have my family have been sterilized don't want anymore kids so I may ask for a hysterectomy

No bloating or painful sex. Trouble with waterworks- not then, but now I have chronic UTI.

I am getting those kind of symptoms, many years ago I had polycystic ovaries diagnosed during IVF so I thought it was that so rather than bother my doctor I paid for a private 'well woman' ultrasound and they found my ovaries looked fine but there was a largish polyp. That was February, my gynae appointment to see about getting it removed is in a couple of week in the hope that will cure the symptoms. If you haven't had an ultrasound yet that is another thing it could be.

Thanks @oddbots but actuallu they have done the ultrasound and apparantly couldn't see anything. Hope your ok and not feeling too rough. I can't even walk fown the road without pain its getting horrendous. I've got from going to the gym and having a six pack 2 months ago to looking about 5 months pregnant constantly. Slightly concerned cancer was mentioned as my cervix hasn't been checked. Hoping for something trivial. D4 seems to think endo is a good possibly and just worried as I can't put up with this pain on long term

Hey there OP, I'm currently being investigated for similar symptoms:
Frequent (but not painful) urination
Bloated constantly
Always full up yet lost weight
Pain during sex
Bleeds between period
Constant lower abdominal pain (gets worse during period and ovulation)
Strangle bowel movements too
One painful boob which leaks

They've ruled out UTI and BV (which I knew it wasn't anyway!)

How quickly did these symptoms come on for you? My GP said she doubted mine is endo because of how sudden it developed (past 3 months).

I was told it is most likely chlamydia (despite having a tests when first got with DH and we both haven't slept with anyone else since). GP said test could have been wrong back then or i just hadnt caught it off DH at that point. Look up chlamydia symptoms and see if that sounds like something for you? Tbf does sound pretty close to mine.

Or potentially could be PiD, again usually caused by chlamydia or other infections.

I've got an ultrasound scan 10 days time to see if there's any ovarian abnormalities. Potentially could be a cyst (or ovarian cancer).

Hope you're aren't getting to worried OP. The symptoms for cancer are so similar to symptoms of other less major health issues.

And I totally empathise with being unable to walk down the street because of the pain. Felt like crying when I went to down with DH and DS yesterday. I could even push the pram because it was excruciating. Had to keep stopping for many breaks.

Hey thanks for you reply. Sorry your having a rubbish tine but kinda glad it's not just me been screened for stis all negative. Plus veen with oh 10 years and had 3 kids so I knew it woukd have been picked up before now. To be honest it orobably started after I had my 4 year old daughter not the pain but had excessive bleeding for 2 years. Last year had an ablation and a sterilisation but the pain has started gradually about 4 months ago and has become unbearable the past 2 months. Other symptoms seem to have been building alongside it like pain during sex and all other things you've said too . Bloody awful isnt it. I have 3 kids 5,4 and 16 months and struggling to cope through the pain . Hope you get answers soon

The top photo is me now...the bottom is my stomach two and a half months ago. As you can see the swelling is pretty noticeable

Strange how you've said it started after your 4 year old. My heavy bleeding and painful periods started after DS and then 3 months ago that pain has become constant. I think I didn't pick up on my other symptoms until now because firstly they were being put down as post-natal symptoms by HV and secondly they have now got so bad that they're all affecting my quality of life and daily routines.

I am taking some comfort in you having another child after your 4 year old. I'm currently TTC#2 and 10 cycles in I'm getting disheartened (DS was conceived 1st cycle).

I'm finding it tough coping with just 1 DC, no clue how you're managing with 3 and this pain etc. Really hope you find an answer soon and it has a simple solution xx

@twittlebee don't get disheartened at all. I got the mirena coil in an attempt to control the bleeding, side effects were so horrendous I threatened to pull it out myself if they didn't remove it....long story short I got caught the night it was removed with my youngest. He's my beautiful little whoops as we only planned two.
Ah see its only when.i sit and think that I realise the ossues have been going on a while everything just seems to have come to a head lately. Keep pushing at the drs I've had to. Don't let them fob you off because they seem to like doung this. Hope you get an appointment soon. Hoping on Wednesday they may be able to give me at least an idea of whats going on. Xx

If you ever need a rant or someone to talk to about it pop me a message. Seems like we are pretty much in the same situation c

Thank you, will be lovely to have someone to talk to about all this. Let me know how wednesday goes. Im interested to know what it could be! Lots of luck xx

I have endo. I’m waiting for a laparoscopy, it’s the only way to definitively diagnose it but I had an ultrasound with a specialist who thinkshe can see it on my ovary, it’s consistent with my symptoms and my ovary is stuck to my uterus.

I have pain all in my right abdomen most of the month, especially around ovulation. I am tired all the time. I get brain fog and headaches sometimes. I get crippling pain 2 days out of my period, although it’s not especially heavy or long lasting.

I’ve had endo for a good few years but it has gone from manageable and no big deal to love changing within a few months.

I’m now on zoladex which seems to already be makinging a difference to my pain and fatigue.

Oh yes and I’m bloated (from flat stomach to 6 months pregnant in a few days) and very painful sex. Although more pain when orgasming rather that intercourse oddly.

I also now have pain when I have a full bladder, they think it’s sticking to my bladder.

KittyandTeal oh bless you! Sounds horrible it really does. Hopefully they can help you even further.

Btw should mention that my GP said she can't do a smear test on me to rule out cervical cancer because I'm too young... I'm pretty shocked at this? I know I'm only a couple months off from being invited to my first smear but honestly thought they'd still be able to rule it out early?

@twittlebee don't rest until you get one. You should automatically get one after a child anyway
@kitty sounds awful I have pain when my bladder is full too. Discomfort during sex but again same as you its ten times worse afterwards. Poor oh hasnt had It for a while and im climbing the walls
Hope you get sorted soon

Hi OP, sorry to hear you’re having a difficult time - goodluck for Wednesday.

I suffered for many years before my Endo was diagnosed. Symptoms included very painful periods and often I would bleed in between - on one occasion bleeding every day for 6 weeks straight. I would get pain regularly which almost felt like my organs were pulled together which would last hours. Over the counter pain killers didn’t help but I refused to get higher dose prescription pain killers. Most of the time I tried to ignore it but it was difficult and held me back sometimes. After I was diagnosed I had 8 or 9 surgeries to remove it (I’ve actually lost count but it kept coming back). Most of the time it was found around my reproductive organs but the last time it was also found on my spinal ligaments causing me terrible back pain. I had two rounds of Zoladex and one of Prostrap in a bid to prevent it coming back but it didn’t work and I found the side effects of the treatment so bad I stopped after three rounds. I then tri cycled the pill for years which was better.

Endo can only be conclusively diagnosed via a Laproscopic investigation.

Thankfully it does not seem to have returned after having my wonderful two children close together.

Sending hugs OP.