My mother is 60. A couple of years ago, following a prolapse and hysterectomy, she started having bladder problems for which she has scans and other tests which showed nothing. Her symptoms were basically that of Interstitial Cystitis.
Several months ago, she started having minor constipation which was helped by lactulose. A month or so on, she started having bowel spasms and bloating. Her GP prescribed IBS meds. The symptoms worsened over a couple of weeks with even more bloating. Fortunately she went back to the GP. She had a blood test and her CA-125 was very high so she was referred for a CT scan.
Some of you might be familiar with CA-125 - it indicates various gynae issues from endo to ovarian cancer. Sadly she has now been diagnosed with ovarian cancer which has also spread to her abdominal cavity and is either pressing on or in her bowel - I believe this is stage three.
I have done lots of reading on ovarian cancer in the last few weeks and a few things have really shocked me:
- Endo sufferers are more likely to get ovarian cancer
- Despite the symptoms being extremely minor and very similar to endo, no gynae has ever warned me about this
- When I've plucked up the courage to see a doctor about new symptoms which could be ovarian cancer, they have not run any tests, or mentioned it to me, or shown any concern
I was diagnosed with endo in 2004 - after five laps, I have been discharged by my last gynae and told that my symptoms are caused more by nerve damage than endo and there's nothing further they can do. I've been told I have ME but never tested to rule out other causes of fatigue.
I've developed a plethora of new symptoms over the last few years. Either I ignore them and assume they're part of the endo / ME or the doctors tell me there's nothing else wrong without checking.
Over Christmas, I developed severe abdominal bloating, bowel and bladder problems with severe pain. I made an emergency appt and even told the GP about my mum - he prescribed me laxatives, lectured me on taking morphine and I left feeling just as scared and unsupported.
The difference between getting diagnosed with ovarian cancer at stage one and the later stages is shocking: 90% of women dx in stage one are alive after five years, compared to 50% for stage two, 20% for stage three and only 6% for stage four.
Doctors have to conserve funds so they play a numbers game - bloating is more likely to be IBS so they don't test for cancer (even though women over 50 do not develop IBS if they've never had it before). They'll only screen women who have had more than two female relatives with ovarian or breast cancer, even though it's genetic in 10% of cases. If my mother now passes away, I believe the doctors who have failed to investigate her symptoms fully are responsible.
As women, we must be aware of the symptoms of female cancers. As endo sufferers, it is even more vital. Please familiarise yourself with the symptoms and stop ignoring your bodies - we know when something is wrong, and we have to stop assuming everything is caused by the endo because we cannot know if that's the case.
I couldn't help my mum, I didn't know the symptoms - even when we spent over two weeks together on holiday earlier this year, I didn't realise that her symptoms were a sign of the cancer spreading. Maybe I can prevent someone else and their family from going through this.
I hope you're all as well as possible.
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cupcakegirl
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On my goodness what a sad story. I can only wish your Mum was taken more seriously before the ovarian cancer got to the stage it is.
Things in the NHS are ALL about funding. As a former psychiatric nurse in the NHS, I became frustrated that I was not able to give the patients the help and treatment they needed. This was solely down to budgets! Shameful !
Thank you for the warning about the signs of Ovarian Cancer. I think a lot of us ladies experience bloating and pain. And you are absolutely right to point out that we shouldn't just assume it's down to the endometriosis.
The only thing I would add to your wise and sincere post, is that if we aren't happy with what doctors tell us, we must get a second (and third) opinion. And we must demand our symptoms are taken seriously.
I am sending you and your Mum, my heart felt best wishes.
Thank you Barbara. I completely agree that we must push hard to get the care we need. I have been guilty of not doing this for the last two years - I was under an excellent team when I lived in London, but I had to stop working and move away and my care has been pretty poor since. What's worse is that the gynae who treated me last (and discharged me despite severe pain from a Mirena ended up needing surgery to remove it) is now my mum's consultant. Hopefully he will take her disease more seriously, because it is, but I will be paying lots of attention to her care and suggesting a second opinion if things aren't going well. Hopefully I won't need to do that though as he has a good reputation with gynae cancers.
I'm sorry you felt you couldn't do a good job in the NHS due to funding - it's so very sad. I understand that they can't test everyone for everything, but I honestly had no idea that we are at higher risk of developing this, or that I need to get checked out if certain symptoms develop, worsen or persist.
This has made me realise that I have to be my best advocate and push harder for the help I need. I don't believe I have anything life threatening, but I have symptoms of various conditions which can be treated, and maybe then I won't be housebound and unable to work any more.
I hope I haven't worried anyone. I just want everyone to be vigilant and aware.
No - I have to take laxatives in order to go to the loo because of my morphine dosage but I have never had any bowel or bladder involvement from the endo, other than adhesions on my bowel which have been removed.
I woke up on Xmas eve with severe cystitis which I haven't had for years - a few hours later, I started a very nasty period. On the 28th, the bloating and tenderness started - I thought it may be being caused by eating more than usual and I wasn't convinced the laxatives were working properly and thought that might be the cause. I made an emergency GP appt on New Year's Eve and explained all my symptoms and my mum's diagnosis - he said that he was sure I'd already had lots of scans and examinations (yes, I have but the last one was about 8 months ago). I told him about my bladder symptoms - he didn't even do a urine test, just told me I have to stop taking the morphine (I get this at every appointment, but the last pain guy I saw said there's nothing else they can do for me so I don't have much of an option).
The bloating has calmed down and my bowels are okay but I've got terrible cystitis every morning which I'm trying to sort out myself but may need antibiotics.
Because I haven't had any support from my GP (I have seen a female GP in the practice who's marginally better but she's only part time), I just get my morphine and other meds on repeat and never see them. I've developed lots of symptoms that I doubt are endo (intermittent severe joint pain, tailbone pain, psoriasis, thinning hair, occasional sensation of choking, strange patches of pigmentation, obvious hormonal imbalance signs such as acne etc, frequent urination at night, worsening fatigue, etc etc) as well as worsening symptoms that could be endo but I haven't pushed for any tests, and when I've brought them up I've been fobbed off and I haven't had the energy to fight for answers.
A few months ago, I was watching a TV show and a woman was diagnosed with leukaemia because she felt run down and fatigued - I thought I'd just never get diagnosed because I'm housebound and don't really know why. Then my mums diagnosis - it's given me a massive wake-up call. Not only do I have symptoms with no diagnosis, even the symptoms I blame on endo could be something serious - we all have to be so careful.
I know that many of us get bloating regularly and I don't want anyone to be panicked by this, but if you do get that symptom specifically and it's unusual for you or more severe, it's really important to speak to your GP. Apparently the difference with the cancer symptoms is that they tend to be constant whereas endo or IBS symptoms tend to come and go.
Even if you do have a blood test and it shows high levels of CA-125, it very well may just be the endo - but if you have the symptoms of ovarian cancer and that result, you really need to push for a CT scan, especially if you're over 50. Knowing this could save your life, it's so important.
Also, I didn't realise that, in genetic cases, breast cancer and ovarian cancer are caused by the same gene. So if there are two or more cases of either cancer on one side of your family (or one case in someone under 50, I think), you can ask your GP for screening. In my case, they think my nan may have had it too before she died but they didn't test due to her age, and I have no other female relatives on that side, so I'll be asking for screening or paying for it myself if I have to.
Don't worry too much about this, ladies - just be aware of it, and fight for answers any time you are unsure what is causing new or worsening symptoms.
I am so sorry to hear about you Mum and what you both have been going through.
I was diagnosed with stage 4 endo and described as a mess after my 1st lap found it. Gynae surgeon wanted me to have a hysterectomy because of endo,fibroids,cyst and adhesions ( I had 3 c-sections) I decided not to have a hysterectomy and told my (great) doc and gynae that I wanted to try everything else first. I took full control of my situation even though by nature I'm not a bossy type of person! But I felt that no matter how good the docs are, they'll all go home at the end of their working day to their families/life and I will have just been another patient to them, whereas to me, it's my health and life I'm dealing with. The surprising thing is that when I took control (with my husband who came to my appointments which is VERY important, to show you have backup and a witness) I got much more respect from every medical person involved, as I was assertive,not aggressive and I had done so much research.
So I tried Mirena (disaster, caused huge weight gain and another cyst, so needed another lap) I did tablets, and I did 3 months of decapeptyl injections. It was when I was on the injections that I saw what life could be like if everything was shut down. Yeah the sweats were bad but NO PAIN for the first time in years and the energy I had was amazing compared to zero energy. I had done so much research and continued to do more and like you I discovered research that said women with endo were more likely to get ovarian cancer. I don't have ovarian cancer history in my family but just the chance of getting it with endo was enough and also the pain had become unbearable, I couldn't work as the endo had now spread to my spine. So I was the one who suggested to my doc and surgeon that maybe I would have
my ovaries removed, they actually thought it was the only thing that might work so four months ago, the day before my 47th birthday I had my ovaries removed. I have not had any of the dreadful pelvic and other pain associated with endo, the sweats are bad but nothing compared to the pain. My mood is great as my doc had the sense to put me on a very low dose antidepressant just before I went on the injections so I stayed on them for the surgery and I'm still on them.
I also have Fibromyalgia so the surgery could have affected me really badly but I feel better than I have in years, even though I still get the odd bit of Fibro pain but I can manage it. So my advice is: take over your own situation completely, have support from someone to accompany you to your appointments, question every medical person you deal with until you get answers, ask God to be in their minds,hearts and hands when dealing with you, and if you do decide to have your ovaries removed I can tell you that my experience has been good and it has also been good for 2 friends of mine, whose mother died from ovarian cancer and they had their perfectly good ovaries removed as a preventative measure. We take calcium, vit D, cardio vitamins to help with the loss of estrogen.
Cupcakegirl, you and your Mum will be in my prayers.
Thank you, and to the other ladies - you're very kind. I saw my mum today and she's doing much better. She's been having distance healing sessions - she's a practitioner of a specific alternative therapy, and the guy who trained her is now treating her. Personally I don't believe in it, but if it's helping her cope then that's great.
She did say that she knows her symptoms are very similar to mine and now she understands what I've been going through all these years and that it must have been awful. This isn't like her to say that, so I was quite surprised - but then she said again that she's sure she could cure me using this alternative therapy. My mum and I have very different outlooks on this stuff, as you can probably tell!
She's having surgery on the 15tg so we will know more then.
I used to be very in control of my treatment - after I was diagnosed, I fought for an NHS referral to a specialist, and after that I had an amazing team and top consultants when I worked in London. It was the toughest time of my life as working full time was destroying me, but my medical care was second to none.
When I first moved to London, I had an awful GP who refused to prescribe my morphine and I ended up hospitalised. After that I got a fab GP, but I'm always wary now of moving to a new surgery in case I get the same thing again.
When I stopped work and moved back to my home town 2.5 years ago, I was so exhausted and just signed up with the closest practice as I don't drive. They referred me to a gynae and a pain guy - the gynae did a half-arsed lap and cut almost all the strings off the Mirena he put in so no-one could get it out an then discharged me while I was having crippling contractions every day (this is the guy treating my mum now) and the pain guy said I had to stop all my morphine within 6 months with no other treatment. At that point I was so scared of having my painkillers stopped with such bad pain that I stopped going to the GP and just order my repeat prescriptions.
A short while later I found out that there's a pain consultant who specialises in endo at my local hospital. I went to the GP and begged for a referral since the last guy saw me for 5 mins, asked me nothing about my pain and discharged me with no help. The GP refused saying it was a waste of time and resources.
I went back to see a different GP with my husband and told her that I really needed to see a pain consultant, and that I had new joint pain that was worsening. She listened and referred me to the pain clinic but the referral was rejected because they weren't taking new patients on. She then referred me to rheumatology instead, which is what I wanted because of all the new symptoms, but the hospital cancelled that referral twice and ended up making me a pain clinic appt. I saw a guy who was very pleasant but said there was nothing else they could do and I should try to gradually reduce the morphine. He said he'd send me a follow up appt which never came and I haven't even bothered chasing it - what's the point? I saw the same GP again on my own and she couldn't get me out of the office fast enough, so having someone with you is really important.
I have made an appt for the 14th with her and will take my husband. I need to lay down exactly how bad my health is become, how anxious I am about all these new symptoms, and that I need to be tested for things that are treatable to see if my quality of life can improve at all. It's hard to fight when you're so tired but this has been a big wake up call and it has to be done.
Sorry - this thread has gone off on a tangent, meant it to be about cancer, not me and my mess of problems! I'll leave it there
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Endo, ovarian cysts and bowel problems
Please tell me it's not all in my head
