Looking for advice

On Thursday this week I had an op to remove a cyst, they also removed my left ovary and tube. I was also asked if I knew I had Endometriosis, and that I will need follow up to discuss pain

Management. I am new to all of this and really not sure what to except. I have had all sorts of things going on with my body the passed few months, thought I would do some research and I came across this sight so I joined up to get some advice, as I know nothing about endo and have frighten myself by reading up on this condition which does not sound nice at all! I am 44 Years old and no one in my family has endo. So i have no one to ask for advice.

5 Replies

  • Hey honey, i know it's horrible to be told you have something but you don't have anything to be scared about.

    Endo is a problem when it causes pain or infertility. Do you have really bad pain or periods? Some women can have endo but suffer no problems with it, the ones that suffer go on the internet so you tend to see the worst case scenario!

    If this is the first you have suffered with symptoms (e.g. Your cyst which I presume you mean was a chocolate endo cysts) I would just be inclined to keep an eye on your periods and pain. As you are 44 your hormones are likely to be in a bit of a tizzy so maybe talk to your GP about the mirena, although if you don't have any period problems you might begetter leaving it for a bit!

    Hope that helps a bit and that you are recovering from your op x

  • Thank you for your reply. My problems all started about August last year when I was getting pains in my pelvis, endo was then question marked, I was sent to have a scan which showed that I had a cyst on my left ovary and was told I would need to be re-scanned in 8 weeks time and they were excepting my cyst to reduce in size, but when I had my re- scan it had grow to 4cm which I was told Was a small cyst and they were going to keep an eye on it, but in the mean time they were taking blood from me to test for cervical cancer,(which instantly made me worried). I was told not to worry as he was expecting my bloods to come bk normal. Once again I got re-scanned and when I went to see my consultant he told me my cyst was the same size but my ca 125 blood results had come bk slightly raise, and on this information he said he was booking me in to have my cyst removed. 3 years ago in oct 09 I had my tubes tied as I didn't want any more family and thought I had my coil removed too. But when I had my first scan to see why I was in pain the nurse said well your coil is in the right place! I was shocked to say the least as I thought it had bn removed and thought this could have bn why I was getting my pain as it hasn't bn checked for 3 years, myself and the doctors thought it had bn removed!! My consultant has since removed the coil and apologised for it bn left in. (Even though it wasn't his fault). I was getting heavy and pain full periods but since I had my coil removed my periods are much lighter but I still get pain when I'm due on, whether it b stomach or backache or both. My bowel has also bn all over the place and at one point went into spasm(I thought I was dying as I was in so much pain). One minute I'm constipated the next I'm running to the loo. At least now I know why my body is doing mad thing.(thought it was just an age thing). Like I said I'm all new to this and i'm trying to get my head round it all, and to see what my options will be. I haven't bn told how bad my endo is, so I'm hoping when I go for my follow up appointment I will learn more about this.

  • Welcome to our world.

    I was 43 when endo diagnosed during op, and I also had left ovary and tube removed (Phew) and 2 endometriomas and was stage 4 endo on everything by that stage of my life.

    Basically you need to consider what is the biggest problem for you once you have recovered from the op.

    If it is painful and or heavy periods that are the main problem and really that's the only time you are having problems then you should look to be stopping your periods.

    Either through birthcontrol pills, or the mirena coil etc

    I had the mirena put in during my op, and it does take around 5-6 months to kick in, but it often stops or at least reduces periods considerably once it gets going.

    It can then last anything up to 5 years, and you don't need to take tablets every day for periods, just let the mirena do its job.

    It doesn't suit everyone but it is certainly worth trying if you haven't done so yet.

    I found it liberating to not have to worry about having a period, when it would start, how long it would last, how heavy it would be, carrying pain killers with me at all times just in case.

    I also found over the years i was getting increasing pains when I ovulated too, and the mirena stopped those as well.

    Endo is very common, and i bet you do know people with endo symptoms, even if they don't shout it from the rooftops. up to 20% of women have it, but most don't have that many symptoms or even know they do have it ! Heavy painful periods is usually kept quiet and women try and 'get on with it' s best they can, thinking it's 'normal'.

    If your main issue is bowel or bladder problems, then they are usually cause by endo growing on or near those organs and from the wounds caused by endo the body grow scar tissue, and for some of us that scar tissue doesn't know enough is enough and it keeps on growing till it sticks or adheres to nearby organs or grows around them contricting them. Theses are gluey strands of scar tissue called adhesions and they are a royal pain in the you know what.

    There is no cure for them, because they are the body's natural defence against further injury or trauma, so if they have got to the stage where they are interfering with bodily functions, or they have glued your organs together to such an extent that they are what is causing your pains then you need surgery to cut them back, but with each surgery it encourages more of the wretched stuff to grow.

    There are specialist endo centres around the UK, plenty in the south, but few and far between elsewhere in the country.

    Each of these accredited endo centres has specialist surgeons on staff to handle bowel and bladder endo, which can mean significant surgery.

    Your gynaecologist or your GP can refer you to one of these endo centres if you do require specialist surgery on your endo.

    The website is


    If you find that having that cyst taken out and the rebellious ovary taken out actually improves things for you in a big way, then you might not want to do anything different to what you were doing before you found you had endo.

    e.g. coping with periods and taking over the counter painkillers.

    Or you might want to have some stronger pain killers on prescription.

    In my case I was getting through far more paracetamol that the daily maximum recommended dose on a few days each month and I was very relieved to be upgraded to a stronger pain killer on prescription that I only took one in the morning and 1 in the evening instead of 4 paracetamol every 4 hours or so. Which was getting ridiculous.

    It is your choice what to try and what not to try. Don't be forced in to taking any treatments without reading up all the patient advice leaflets first. So if you are given a prescription for a new drug, before you exchange the prescription for a drug at the chemists, google the name of it and read up on it. Make sure it's something you are willing to try before you spend your money. Any questions about any of them, ask on here, there's bound to be someone stopping by on the forum that has tried the drugs you have been prescribed.

    Another option if your pains continue post op, and hopefully they won't, is to try altering your diet to see what foods make your pains worse.

    there is a diet called the endo diet, which basically tries to cut out the foods that promote your body to produce oestrogen the hormone that feeds the endo and helps it to bleed each month which causes pain.

    Many ladies have cut down their pain levels simply by cutting out certain foods.

    Gluten/Wheat seem to be big culprits in pain, but it's about trial and error seeing what does and doesn't work for you. So it's something to be trying over a long period of time.

    Keeping notes in a book about what you ate and when, and what effects it had on you and your pain and your digestion.

    It's not a diet that means you definitely don't touch certain foods ever again, but if you know what can make the pain worse then you're more likely to avoid those foods.

    It's tricky to balance that, with having a healthy varied diet. With endo, your body is constantly battling internal injuries, and that process can be physically exhausting without you even being aware of what's going on inside. You might not have much pain, but could be shattered most of the time. It's important to look after yourself, sleep if you have to, medicate if you have to, don't over do it.

    Exercise should not be too strenuous, as excessive strain on your tummy area from some sporting activities will injure an already injured tummy and promote yet more adhesions to grow, however some exercise is beneficial, just keep to the gentler kinds to avoid making things worse for yourself.

    Please don't panic about endo, each and everyone of us has a different set of endo symptoms to anyone else. what works for some doesn't work for others. there is no cure, but there are all sorts of things to try and keep the symptoms under control and make your quality of life better.

    There's no immediate urgency to try anything yet. First thing to do, is get yourself well after the op. It might feel like your insides are all falling down each time you stand up so be gentle with yourself, your organs have been poked prodded cut about, probably lasered too, and certainly pushed out of place by the cyst and the op. so it will take time for the organs remaining to settle back in to a comfy place again.

    Give yourself a good few weeks before undertaking anything like exercise, other than just frequent pottering around the house walks and short walks outside.

    Followup appointments don't usually happen right away if at all, it might have to be something you visit your GP for, many of us are promised a follow up appointment after an op only to find it never happens. The gynaes are just too busy, and will probably have long forgotten your op by then anyway.

  • Hi Atkinsonfsl :)

    The very lovely (and wise) Impatient has practically just written a book! :D but I can thoroughly recommend another one for anybody new to endometriosis, or indeed anybody who's had it for years; I was diagnosed 21 years ago and I still dip into it from time to time. Look on Amazon or any other good book retailer for Endometriosis For Dummies (here's a link to it - amazon.co.uk/Endometriosis-... )

    But as has been said, please don't panic. It can be a horrible disease, but other ladies can live for years with all of that going on inside them and not even know until it's diagnosed by accident. There's no cure, but at the same time it's not going to kill you. You might need to see the doctor every month, or you might not see him/her for years now. You just have to go with it.

    Good luck, and lots of love

    C xxx

  • Thank you for your reply, will go on amazon and check the book out.

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