Newbie, helloooo....be nice to talk to ladies that actually know what I'm talking about

Hello.....im Jo from Newcastle under Lyme. Ive Suffered for 7 years with painful periods, cysts on both ovaries. Polyps, blood in womb. Blocked left tube. Had the dye put in. Never fell pregnant now 33. Diagnosis was endometriosis and now waiting on larascopy ( if that's how you spell it) .

Of course I want babies longterm,but right now its about trying get my health back to where it was.

Is there such a thing? Will I be full of beans after larascopy or is that naive?

Lowered my hrs at work as I'm so tired and get brain fog, Pain etc

how do others cope at work?

Is your boss/company supportive?

Pain on periods is horrendous, off work sick at due to it this week as I was due to work down south so had to cancel.

Lovely to meet you all xxxxx

8 Replies

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  • Hello, I'm new on here too and submitted a post hoping for some similar advice....

    I have endo and a cyst on my ovary but after my laparoscopy I was in awful pain still for a few months then it got a little better. I even fell pregnant but miscarried and after that the pain has been back with a vengeance. My return of pain may be because my cyst has returned too though and I know the surgeon who operated on me didn't remove an endo as she was too worried to touch it (so in back to square one!).

    A friend of mine had two laparoscopies and fell pregnant straight after her second. She describes no pain anyway so said they were fine for her. So I think we are all different and will have different experiences (sorry that's probably not very helpful!).

    I'd guess that if you have a good surgeon who is specialist at treating and understanding endometriosis and who isn't scared to try and remove what he/she can then it may be a successful op. I hope it gives you what you need.

    With regards to work, I'm looking for similar advice, I keep getting frustrated looks when I'm in pain at work because of my "period pain". I have a job where I can't take meds when at work too as I need to be focused and have only taken time off for my op and the miscarriage (in 9 years). I was nearly put on sickness monitoring but managed to avoid it somehow.

    I'm wondering what my options are and how to get across to people that it's not a nice condition and that I'm not a hypochondriac. If you work this out please get back to me!

    I hope this answers your question a little... Sorry if not.

    X

  • Oh and I'm also 33!

  • Thanks for your reply. So good that you conceived, I know it ended sadly but it's upped your fertility chances by the sound of it.

    thanks for sharing the story as it gives us oldies some hope of having a family.

    can't believe your surgeon wouldn't remove it, what's the point of going inside you and opening you up else. It's so frustrating to hear that.

    Work wise I got a sick note from doc this week as was due 180 miles away for a meeting, thought they were having a laugh as it was time of the month too.

    hope fully this will shut them up as I asked doc write a letter as they'd requested proof, she went mad and said sick note is a legal doc don't let them bully you.

    im on a 18 week waiting list and have waited 7 weeks, I keep thinking once it's done I'll be fixed but after educating myself from this group this doesn't always seem the case.

    where do you go from here then now will you get referred again?

    Lovely to meet you xx

  • Hello and welcome!

    This site is an absolute god send so I hope you find some comfort in it.

    I had my laparoscopy 3 years ago almost to the day. The surgery itself went well but personally I found that the recovery wasn't easy. The worst was the trapped wind. They fill you full of air so that they can see what's going on and my word the pain waiting for that to leave brought tears to my eyes! A heat pack and lying on your left side helps. Once the post surgery symptoms had passed I felt pretty good (took a couple of weeks). My GP put me on cerazette which I have taken with no gaps since the surgery and for me it has stopped the bleeding completely. Sadly though I am currently waiting for an appointment with a specialist as it would appear it has come back. But at least I know what I am dealing with.

    With regards to employment that really does depend. Before I was diagnosed last time I had just started a new job. I was sick all the time in too much pain to get out of bed most mornings and unfortunately they thought it best to terminate my contract. I was devastated as I was stressed anyway and as my partner was self employed it meant everything was a real struggle.

    Now I just take a lot of painkillers which mean I am almost permanently feel like I am on a fluffy cloud and they do take the edge off the pain. I guess I am just more determined than I was before not to let it take over which isn't always easy.

    I think the best thing is just to be honest with your employer and if you have an HR department or somebody approachable in management really make them aware of your symptoms and try to get them to understand. I know that isn't always easy.

    Sorry I have rambled on a bit but I am sure you will get some more helpful feedback from other users.

    Good luck with your surgery, I hope it is a success and life can go slightly more back to normal for you.

    Beth

  • Hi

    Until the surgery it's hard to say your end result.

    I will tell you my experiences so far and hope it helps and does not worry you too much.

    I had similar diagnosis 2 and half years ago and had the lap surgery. During the surgery they discovered it was stage 4 endo (they originally thought stage 1 or 2 at the worst) and when they went in discovered I had lesions on everything from waist down. After 5 hours of surgery they recommended another full surgery to deal with lesions on bowel etc (everything on the left they could not reach through the original keyhole surgery)

    I have been putting this off for 2 years now as no one can say if it will result in a permanent colostomy.

    So I have been having depo Injections to put me into chemical menopause and taking tibilone to help with the symptoms of the chemical menopause and prevent damage to bone density.

    After the first surgery I felt almost human again and have managed to continue to work full time.i would add the tiredness I experienced was the cysts not the endo and once they were removed energy levels went back to normal. And with the depo Injections no further cysts have formed.

    But slowly the pain and symptoms of the endo have crept back and got worse. I have finally admitted defeat and I am waiting for the next round of surgery which will include dealing with lesions around bowel, bladder and vaginally area and a full hysterectomy and possibly a colostomy.

    I have had to fight for the hysterectomy as they believed the Injections should shrink the endo. They were wrong and have now admitted they cannot use the Injections anymore as I am over the 2 year limit , but removal of the Injections is not an option as they believe if they do that I will be back to square one within 2 years.

    My manager is a star and it helps that my job involves me working at home at least 2 day a week and I have flexibility around the hours I work. They are already planning how I can work at home for 8 weeks after surgery so I don't get bored and lose too much money.

    It's been a long road to accepting get things I cannot change, and education of my manager about the effects it has on life.

    Lifestyle changes have helped with the pain such as becoming 90% vegetarian and eating small meals so my bowel is not under pressure. On the up side I get to eat more cake In order to keep My weight up

    excercise has helped with pain control swimming , cycling and walking have had the best results and I go to the gym as much as possible and also have treadmill at home.

    A good friend also taught me acupressure on the hand which connects to the nerves through womb area and can help with pain relief.

    But every experience is different I know people with endo who have had a very successful surgery and gone on to have a child.

    I think for now do not expect anything one way or the other As there is no set answer and no set solution, it's a wait and see game. Probably not tell answer you hope for but it's the reality of the disease.

    There is also talk of a tablet that is having excellent results in shrinking endo and allowing people to have children and this is on trial at the moment in some countries.

    Be optimistic . Rely on friends and trial and error will help you find the best routes and solutions for

    Xx

  • Oh and never call it period pains at work I always say it's a flair up of the endo.

    People seem to accept this more ☺

  • Wow all these posts have been really helpful to me and answer my post a little (I posted and called it "sleep deprivation"). I also have endo on my bladder and bowels (they say it may be in both extensively) but they didn't have a good look. The pain is so debilitating but I have heard about good results with acupuncture and reflexology (although price is a consideration I guess).

    In answer to your question, I asked for another referral after my miscarriage as I knew my cyst was back due to the pain. I had another scan to confirm. My next options were given to me (by a different consultant) as referral to a specialist who will do an extensive op to try and remove the endo but this may result in a colostomy bag or I can have injections to trick my body into the menopause (sound like those described above). As I'm trying to conceive I didn't opt for that and he said one day the pain must overcome my need to "desire to conceive". I doubt this but I struggle with the pain so much.

    I didn't experience pain through bloating after my laparoscopy but I was warned about this. There's a couple of angles as the cyst is an endometrioma so linked but a different op. They may give you a few different choices but I hope you see a specialist. My experience seems to be similar to some on here but if I had known about the specialist hospitals if have chosen one as I live near it!

    Lovely to meet you too :-) on your advice I think I'll be writing to HR or at least my manager as they're asking me to work regionally now too. Keep me posted.

    X

  • just realised I didn't reply to this posteventho I read them. how rude of me.

    thanks for the advice and input ladies. greatly appreciated xxxxx

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