Need support having a break down.

I’m honestly having a mental break down and I’m not sure how much more waiting and wondering I can handle.

I’ve spent the last 4-5 days crying my eyes out and being in so much fear and feeling anxious

I’ve posted a lot but I stated getting pelvic pain in July. I remember having the worst pain during my period on July 29th and ended up going to A&E and having a CT scan. It showed fluid around my left ovary - I was on my period at the time.

I was then sent for a abdominal ultrasound early September which showed my ovaries to be clear no fluid and no abnormality . Yet I’m still in pelvic pain, period pain, leg pain and hip pain. Throughout this time I had loads of regular FBC blood tests done all which were normal.

I ordered myself a CA125 test and the result was 47 - slightly raised. This is when my panic set in.

I saw a Gynecologist a day later as my appointment happened to be booked that day. She said she wasn’t concerned.. yet I am.

I’ve spent The last 4 days in bed, constantly needing a wee, not eating and just in complete break down mode. I feel bloated, stomach upset and everything under the sun.

I’m awaiting my priviate laparoscopy.

I’m so convinced I have cancer and I’m just a complete mess. I’ve having bad thoughts and I just can’t handle this waiting period

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45 Replies

  • Big hugs. Its natural for our minds to jump to the worst. From what I have read, a slightly raised CA is not uncommon in Endo sufferers at all.

    From my experience when ovarian cancer is even a low possibility you get seen ultra quick so if you have been seen by a gynae who has take your full history and isn't worried I would try to be reassured.

    When my GP found my endo lump she had me do the cancer blood test the very same day and the results came back very quickly though it was still a week of super worry and it took me a while to come down from cancer panic mode and have confidence in the actual test results and that it was "only" Endo not to diminish Endo which has been pretty bloody awful in its own right and plenty enough to contend with.

    Hang in there you'll get through. Xxxx

  • The slightest raises result scared me.

    Honestly haven’t eaten in 4-5 days due to upset and worry :(

  • So sorry to read that you're feeling so anxious. My experience might help you, my ca125 was 463... and masses were seen on ovaries during MRI scan. I was fastracked through gynae-oncology, BUT after removal of my ovary and lots of endo it was confirmed that I did NOT have cancer. the endo specialists say these high ca125 levels can be found when endo is active in the abdominal cavity. Hope you get some symptom relief soon x

  • Hi. The new endometriosis guidelines advise doctors to not use the Ca 125 blood test as it can be elevated for various reasons and is not diagnostic. Ca 125 levels would be up in the high hundreds/ thousands if it was cancer so I would really try not to worry. I have stage 4 endo and my Ca 125 was a lot higher than yours. My consultant said that in all the time he has been doing it he has had 2 women come in thinking they had endo, and it was cancer and they were much older than me. Did the hospital test your urine as a uti can also cause pain and may explain why you need the toilet so much. Xx

  • She said it wasn’t very high and ‘not to worry’

    .. I did the test priviate via medichecks out of anxiety :(

    I have a chronic bladder condition / infection so wee troubles are always around for me. I think the weeing is due to nerves and anxiety I haven’t eaten or slept in 4 nights.

    Like I mentioned my CT showed ovary fluid which was then gone during my abdominal ultrasound - I couldn’t have the vaginal one as I was too nervous but she said she could see the ovaries ‘beaufufully’ on the abdominal scan and everything was logged as normal including my ovaries and uterus and entiometral lining. The ultrasound woman mentioned that endometriosis wouldn’t be seen on an ultrasound tho and the only way was a lapascopy.. now in waiting for my lap via spire

    I’m just in panic mode and it’s horrendous. I know I’m not eating due to nerves, I keep crying and breaking down, I’ve never been this anxious in my whole life and I generally suffer from anxiety but not like this. Not this bad.

    Did you have all the scans as well?

  • This isn't absolutely right, whilst endo can indeed cause high ca125 it is also possible to have low readings and have ovarian cancer.... this is not meant to panic anyone. My ca135 was 463 with no cancer, just endo, but I know people who had low double digit results with confirmed ovarian cancer.

  • They keep telling me to be reassured by the CT with no masses and with the clear ultrasound. I guess that’s all I can do for now.

  • absolutely, and as I said above, my ca125 was much higher, with masses, but NOT cancer. x

  • Yeah I’ve not had an MRI apparently that’s a clearer picture. I’m just an emotionally mess whilst I wait for my lapascopy should be within the next week or two.

  • I haven't had a CT but my endometriosis is visible on an ultrasound scan as all my organs are stuck together so you can't really miss it. I wouldnt google symptoms because you will always find the worst case scenario. Worrying about it means you suffer twice and not eating won't help how you feel about everything. The less you eat, the worse you will feel in yourself, which will make you more stressed, making you more anxious. Try doing something that you enjoy to take your mind off it. Have they given you a time frame for your lap? xx

  • Did you have transvaginal?

    My lap is anything from now to two weeks

  • I have had both-transvaginal and abdominal. That's really good. I had to wait 6 months for mine

  • I think the first thing is to tame your anxiety down. Have you tried Kalms for your anxiety if it's hit fever pitch? It is usually good for me in a crisis.

    For utis have you considered these

    Could it be interstitial cystitis

    I had interstitial cystitis and found organic paraben free sanitary towels and toiletries and using no toiletries on that area in shower all helped me.

    If you suffer urinary frequency it may be worth checking out a women's health physio to help you strengthen your pelvic floor. A lot can be done.

  • I will try kalms.

    I agree I think that it’s making everything worse.

    I have an infection in my bladder unfortunately :(

  • I went through this on my road to being diagnosed with endo - I had my ca125 done by my GP after I'd had abdominal pain which had landed me in A&E. I'd been seeing this particular GP for a while with bowel symptoms and problem periods. He'd told me I didn't have the symptoms of endo and that I had IBS and was perimenopausal (at 37).

    The first ca125 they did came back at 119 and this same GP told my husband and I over the phone on a Friday afternoon that a raised result meant an 80% chance of ovarian cancer. He was talking out of his arse TBH, but we waited 5 horrible days for an ultrasound which ruled it out. It wasn't my first cancer scare - I'd had a breast tumour biopsied a couple of years before that which had turned out to be benign, so I had some experience of coping with the wait, but it was still awful.

    My ca125 was repeated twice more on the way to diagnosis and came back at 85 and 107. The gynae I was eventually referred to said that they do not start to think about cancer until the numbers are in the high hundreds or even the thousands. Yours is barely raised at all and you have a clear ultrasound which means that you do not have ovarian cancer. They have ruled it out. Ca125 is generally a bit of a dodgy test anyway because it can be elevated by all sorts of different things including endo, and some women have high ca125 with no apparent cause. It isn't even that accurate at picking up cancer. It is not a definitive test for anything, it is just a starting point that tells them you have signs of inflammation.

    I know the waiting is hard but please take heart from the clear ultrasound and try and take things one day at a time. You only have to get through the next 10 minutes, and then the next 10. x.

  • Thanks for this message.

    My gyno said it was hardly raised and I took the test whilst just finishing my period. She even suggested to re take it on a good day/ mid cycle

    I could only have the external ultrasound sometimes they can’t see parts clear but on mine the lady said my ovaries were beautifully clear and normal as was all my other lady bits on the screen lol. I guess that is reassuring and that I don’t have a pelvic mass.

    My CT showed the fluid on the left ovary which was gone via the ultrasound. But again no masses.

    I guess I do have inflammation around there anyway as I have a chronic bladder infection.. makes sense too. But if I have endo then it makes sense too. Everyone keeps telling me my scan results should be reassuring but I’m still so so worried.

  • My aunt, on my mums side has endo, she had to have a hysterectomy at 36. So it is in my family line..

  • Hi Joreilly,

    I don't want to scare you but most doctors do not know about neuroendocrine cancer.

    The symptoms are the same as IBS. My 42 year old daughter has it after being diagnosed with IBS.

    Please ask your doctor and do research...

    Love DeeDeeMe

  • You can only go by scan and test results or you end up in an emotional mess - like me lol.

    IBS symptoms are also symptoms relating to endo cysts and other stuff that’s the issue.

    The only thing I can go by is my scans haven’t shown any masses or anything worrying.

  • It’s common people get diagnosed with IBS and actually have endo and never know about it.

    It’s one of those things isn’t it. I if they suspect IBS they aren’t going to send you for scans :(

  • Went to the shop and got kalms, taken two. Hopefully it will take the edge of, will help me regain an appitite abs help me sleep x

  • Hi. Ive just read your posts. Im sure you've done lots of reading now anyway but I just wanted to say it can be v normal for some women to have elevated CA-125 levels. Levels can also ve higher if tested when u have your period. Its frustrating when doctors say not to worry when we still have symptoms.. our bodies won't let us forget it! Id really try to concentrate on relaxing cos elevated stress hormones and lack of sleep will make your inflammation worse. Try epson magnesium bath salts, calming tea or relaxing massage as well as your calms. Hopefully you ll get your laparoscopy soon which should tell you more. When I had my CT scan I had fluid and bleeding from one of my ovaries but by the time I had laparoscopy it had normalized.. cysts, even bleeding cysts are apparently common and benign. If your laparoscopy doesn't show anything, you could ask for an MRI. The laparoscopy should show any adhesions if they are outside organs ie. In the cavity. CT doesn't reveal them. An MRI can detect past and current inflammation inside organs. Peeing alot can be anxiety aswell as infection but also pressure from inflammation. I used to go every half hour to hour during night and thought the endo must be inside urethra or something, but since switching to a diet for endometriosis, I'm only going 2-3 times. Check out One Part Plant by Jessica Murnane.. its a lovely book which might help distract you a little whilst u wait for your answers. Take comfort in the fact you are on your way to finding out.. and its good u have private health back up too. Buddify is a free app of relaxing short meditations involving some for pain. I hope you feel more calm soon. x

  • I haven’t eaten in a week honestly and I’ve lost weight I’m so anxious I’m just off my food and then I feel pressure to eat which in tern makes me more anxious :(

  • Have the calms helped at all?

    I use magnesium and something called L'theanine (not thiamin). It boosts the alpha brain waves.. same ones we get when we meditate. Ive tried lots of natural products for anxiety and this seems to work v quickly ie. Within 40mins taken on empty stomach.

    I also posted elsewhere about cbd oil for pain. Ive read up online and lots of people recommend it for endo sufferers cos as well as apparently being good for pain it is good for the anxiety that comes with the condition. You can get it on amazon. Love cbd is meant to be a reputable brand. I have to say I only started it yesterday: bought a high strength paste which tastes a bit unpleasant.. still have needed nurofen and paracetamol but I slept so well on it.. and I usually wake many times in the night to pee or cos of pain. I think I only woke once or twice! Seems that helping with pain, sleep and anxiety in a oner could be useful for you. The other great product for sleep is Cherry Active juice which is rich in melatonin which is our sleep chemical.

    I really feel for you with the anxiety. Can you ger yourself to just eat a bowl of soup for now, have a relaxing bath then try the buddify meditation app and see if you can sleep? If you manage a rest, your appetite should follow. I agree breathing techniques also can help.

    Take care of You. Xx

  • Hi, the kalms relaxed me at bedtime but only took the edge of but it isn’t a cure but we knew that it’s only herbal.. but it’s relaxing.

    I’ll try CBD I’ve heard good things!

    I think my anxiety / reading on google is causing a lot of symptoms like needing to wee and loss of appitite as this has only just happened since I’m waiting and reading lol.

    I managed some toast today.. every little helps lol

  • That’s like my fluid around my ovarie was gone on my ultrasound. Could have been my period to be fair. It’s just the waiting for the lapascopy that’s killing me

  • The anxiety and fear of cancer can be awful, honey. The lack of sleep and food will be exacerbating your anxiousness and insomnia so please have something nourishing to eat and try some mindful breathing to steady your heart rate. If you count to five on the in-breath and to five on the out-breath for a few minutes, this will have a calming effect on your body.

    Raised levels are typical in endo. sufferers which I hope reassures you.

    I had fluid show up in my transvaginal scan which was caused by a ruptured cyst. Did you experience sudden, severe pain at any point (different to endo pain)?

    I have a new cyst on my ovary which is causing backache and major bloating. Could you have another cyst? That said, endo. causes these symptoms, too.

    On a positive note, you have a laparoscopy scheduled which means you're very close to diagnosis. The not knowing is what's hardest because the mind can assume the worst (I know mine did). The level of pain is so high, we assume it must be cancer.

    Hang in there and reach out to us if you need to talk it through.

    Lots of love and a hug, x

  • When I had my CT my legs were shaking and the pain was horrendous - I Was on my period.

    So It could of been that as the fluid had disappeared on the abdominal ultrasound. Would explain it.

    I guess I should be reassured by the scans really but it’s hard.

    I know I’m not eating due to fear alone. Just been a mess for days :(

  • Google luteal cysts... they are normal and show up at the end of our cycle/ residual at start of new. I dont think CT scans seem to reveal much, other than to give the surgeon an indicator of where to start with laparoscopy. I was so scared to be told I had a large bleeding cyst, but two weeks later when I had laparoscopy it had gone!

  • Gould be that yeah :)

    Lot of woman in my family have had gyno related cysts and endo. CT shows masses, I can be reassured I didn’t have that.

  • When is your laparoscopy?

  • Within the next 2 weeks

  • Thats good.. not too long now. Make sure you have a few days free from obligations and get some good magazines, heat pads, peppermint tea. I used fennel in a massage oil which seemed to help with pain from the gas they put in you. Read up on what to expect post lap cos it can be uncomfortable. Get a box set and tv in your room to take your mind off it.

  • Looked up the symptoms of the cysts, I have all those pretty much x

  • Actually my symptoms fit it like a glove, pain in legs during my period, period pain. Feeling of needing a Bowen movement, feeling gassy. Basically all fits.

  • I’ll have days of feeling fine and other days I’ll have a striking pain or back pain. The cysts theory would make sense

  • Yes, I put off following through with diagnosis cos my full on attacks only came every 3 months on average. (It was then that pain was so intense I couldnt speak or think or move). The pain inbetween times, i could handle with painkillers and I thought this was normal. Then I discovered that we dont necessarily ovulate from both ovaries each month... my left one is badly affected by endo adhesions.. makes sense now that I had these episodes sporadically.

  • That’s interesting. My pain is constant but I’ve had moments where it’s horrendous I remember struggling to walk around Morrison’s when it was bad one day and the day before I ended up in A&E I had an agony period. Then a few weeks ago I’m stroling around Manchester without a care in the world lol.Other days no pain relief required, other days I need it, other days I just have back pain.

    All seems to relate to my period.

  • I now have a low grade pain all the time, but intensifies around ovulation, luteal and period. The 'attacks' I have are just crazy and worse than childbirth, but thankfully I don't have these too often!-

    I got an ovulation app when we were diagnosed with secondary infertility... now I use it to make sure I don't plan much around the tougher parts of my cycle. Sadly the baby window came and went.

    Its hard having your life controlled by this. Im still hopeful ill find a way to manage it though... trying allsorts!

  • Mines daily however worse on period time or random times.

    I also have a chronic bladder infection so whatever is happening is having a lovely battle with my bladder I imagine I’ve suffered with bladder issues since I was 16

    Your pain levels sound similar to me, up and down.

  • They also mentioned fluid can come and go in the mestral cycle anyway and the fluid was only minimal.. so I guess that’s reassuring.

    It’s the waiting that’s killing me.

  • Endo is like a silent disease...the amount of people who actually suffer in silence is ridiculous. All I can say is I had horrendous work 3 days every month throwing up sitting in a shower at 2am for 2 hours for some relief....i have had scans internal external mri the whole shabang and it took a good 3 years to diagnose endermetreeosis....i have pain constantly and have poached my belly putting hot water bottles on it....i have urine infections every other week and can walk for half hour and then I am done....i have stage 4 endo...and this has caused me to have water retention..i now have a stent In my kidney to relieve pressure....horrendous bowel codomol have made me constipated so now on laxatives daily...i take antiinflammatories but honestly tramadol and not moving are the only thing that works...i had laparoscopy in 2013 and surgeon told me I have fibroids a 4 cm mass of endo which he lasered...but also adhesions so all my organs are sticking together....i am now 7 years into this journey and have a full hysterectomy booked in November and I cannot get everything removed....point is there are so many symptoms and things that can be the outcome of endo but it take s a long time to diagnose and get anywhere...i hope you have good support around you cos I couldn't have done this with out my hubby and friends....

  • Interesting about the UTIS I’ve had bladder issues since I was 16 but pain free periods but I wonder if the uti thing could be connected I know people get bladder issues with endometriosis so it would make sense..

    I’ve always had bowel issues tho, huge bowel movements and constipation for years.. I’m only 5ft4 and 8 stone and it’s been a running joke in my family since I was a teen.. but adding it all up it makes sense maybe

    I’ve had Pain free periods for years and it’s all gone un noticed but always had bowel and bladder issues...

  • I have had moments like that where I look back at things and now realise that it may have been to do with endo....its unfortunately really a cruel of luck xx

  • Sorry to hear you have such anxiety issues. Unfortunately it will not go away with just reassurance from everyone. Sometimes, the more reassurance can feed anxiety. What about visiting your GP or trying out cognitive behavioural therapy? As anxiety can get worse and worse if not managed.

    It is normal to be anxious about one’s health. However, if it is beyond rational and clearly out of control. Then it is quite all right to seek professional help.

    All the best.

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