Worried and feel alone

Hi im 27 and have been living with endo for at least 10yrs, with docs fobbing me off saying I 'just have painful periods' and put me on the mini pill.my husband and I have been trying to conceive for the last year and no luck.pain was getting unbearable.finally april this year the doc said to put me out of my misery they'll do a lap.low and behold they found severe endo n adhesions and cysts in/on (not sure) ovaries, so bad the surgeon couldnt do it and so refered me to a specialist, took2months to get appointment to see specialist and now have to wait until aug for next lap. depressed that they found something and even more depressed I have to wait so long.but to top it off I have to put baby planning to 1 side and have monthy injections for minimum of 6months to bring on fake menopause-the idear of this scares the hell out of me! And the cherry on the cake....I asked my gp about this and how to deal wiv the sever pain for the next several weeks and about having kids in the future and he said (unsympatheticly) well id be surprised if u conceived naturally, u'll prob have to have ivf, which if very invasive on life, but hay so's having kids! At that point I wanted to punch him! Had the docs listento me in the 1st place and investigated sooner it might now of been so bad.im so worried i cant have children now.all I know is my tubes r clear n mobile n I have regular periods.Please is there any1 out there with a happy ending because I need some hope to hang on to, I wana feel like im not alone xxxx

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  • Hey,

    Just to say your not alone. You will find lots of people on here with a very similar story.

    I recently have been diagnosed and this site has been everything I needed from a friend.

    Im currently on zoladex, one of the drugs that induces fake menopause. It has been a roller-coaster, have a look at my previous posts but I can honestly say months on its the best ive felt in ages.

    It plays with your mind knowing you're in the menopause so young, I was 30 last week. This whole thing makes you feel insane, but i've found the only way to get through it is taking one day or one section of treatment at a time, not being too hard on yourself and learning to adapt to new life style.

    The last part is the hardest.

    I found starting part of the endo diet gave me some control over my life that had been taken away and also has really helped with my pain.

    Do tons of research as knowledge is power and come and talk on here lots.

    Pm me anytime.

    Good luck on your journey. Being diagnosed is the first step in making things more manageable xxx

  • You're really not alone, sweetheart - lots of us are going through the same or some of the same, and we all understand.

    Don't be scared about the zoladex or similar that puts you into the menopause - I took it from age 25 to 27 (you're not supposed to take it this long but it helped me so much that my specialist kept me on it) and it was great for me - it meant I could work full-time again. I started having problems about 18 months in, but if I'd only taken it for 6 months I would have been fine.

    Just to clarify, are you starting this after the surgery or before? If its after, then this is a good thing - it means that any Endo they can't get to or remove should be dealt with as these drugs can actually starve the deposits of oestrogen and shrink them, rather than just 'pausing' them. If you find the side effects too much, you can take HRT to help but I didn't as I found the side effects far easier than the pain and fatigue.

    Your best chance of conceiving comes after a lap to clear the Endo, and this treatment should help further, so your specialist is suggesting all the right things. I know it seems like you're having to wait a long time but it's only another month - try and stay positive and focus on the end result.

    Your GP shouldn't have said that to you, although unfortunately many women with severe Endo do need IVF, others don't - everything the specialist is doing is improving your chances of conceiving naturally so it's not something to worry about at this stage. I know it's frustrating having to put your plans on hold but you're still very young and have plenty of time. I don't know if they mentioned it but there is a tiny risk of conceiving on zoladex etc which is extremely dangerous so you have to use condoms throughout the treatment.

    You should go back to your GP and ask for some proper pain relief, by which I mean codeine at the least but preferably tramadol plus paracetamol and an anti-inflammatory. You may get a better result if you take someone with you.

    Unfortunately, although I'd love kids, we're not in a position to try - I'm on very high doses of morphine and can't function having unregulated periods, I have severe chronic fatigue and possibly lupus or a type of arthritis so I couldn't cope with a baby, and my hormones are screwed up so I have no libido whatsoever and cant do anything sexual, plus I now find sex or any internal exam excruciating - there's no way I could deliver a baby. All of these things mean its impossible and I'm 31 today so I'm running out of time which terrfies me.

    Sadly most of us took a long time to get answers - the average time is 9 years - so we know how it feels. Try to stay positive and focus on the fact that you're under a specialist and are getting the treatment you need now. Hopefully things will improve quickly for you.

    Xx

  • Hi there,

    I can understand your frustration. Sometimes gp's are a law to themselves.

    I had my first sign of endo 13 years ago, started with small cysts on each ovary. I was told they would go. In my twenties I suffered with severe periods and painful sex. Endo was never mentioned!

    In 2007 my husband and I started to try for a baby, within 3 months I was pregnant and have a very healthy 4 year old, born by emergency section! In 2010 started to try for a second, no luck for two years! Numerous visits to gp's who did so many tests that showed nothing was wrong with either me or my husband, I was so fed up that I changed gp and straight away got referred to a fertility unit for a scan which showed two large cysts and endo. From there I was booked in for a laparoscopy, waited six months for op date which was January 2012. Horrible op isn't it. When I came round I got told I had stage 5 endo, which they thought had been growing for the past 8 years! it was on my ovaries, bowel, bladder and uterus! Surgeon like yours couldn't remove it all but I was told unless I had severe symptons I should leave well alone! I was told if I didn't conceive in three months they suggested ivf! Well like you I just couldn't get my head round that so me and my husband just kept trying and exactly a year on from my op we fell pregnant naturally. I'm now 25 weeks and although have more complications which is a different story we got there. I really hope this happens for you too. Keep pushing for answers and help and don't give up. When I was 6 weeks I had an early scan and they saw endo back on right ovary, the disease is a monster.

    Thinking of you.

  • thank you for sharing this!

  • Hi, I feel so sorry for you. I too have had severe endo probably I now realise since I was a teenager though it wasn't diagnosed until I was 40. However I have managed to have a wonderful daughter and been pregnant a few more times, though unfortunately lost one baby (nothing to do with the endo) and had a couple more miscarriages (which could have been related to my problems as I had adenomyosis too). They only accidentally found the endo when I was being investigated for the miscarriages and were pretty shocked at the state my insides were in with everything fused together. So don't get too down - you can conceive with endo and I know of other women who have struggled with it and now have children.

    I'm afraid I don't know anything about the drugs you need to take but I agree with a previous post that diet might help, it certainly has with me. And talking to people and researching as much as you can is great, which it sounds as if you're doing.

    Good luck!

  • Thank you so much for all your replies. It really helps, especially hearing about your lives years after being diagnosed. I duno if any of u feel the same, but it just feels like a life sentence! Its with us for good. So have any of u been given long term treatments/solutions? I know a couple of u guys mentioned following a diet, is this diet different to the individual or a strict does and dont eat for all that have endo? I've tried acupuncture and Chinese herbal medicine but didnt have any major inpact on endo, not enough to justify the amount of money I was spending!xx

  • I'd like to know more about the diet thing too. I've heard eating sweet things can cause flare ups but my god I don't think I can cut that out!

    If it helps I had reflexology, it seemed to calm my mental state, give it a go.

  • I agree I couldnt cut out the sweet stuff!! But I think I saw sumwhere bout choc being on the list! I've had reflexology in the past in it made me more emotional! But that was years ago wen I had teenage hormones to deal with!

  • Oh did you, that's a shame. I hope you find something that works for you and quickly.

    Found a web site on diets! Yep choc is on there but so is every other food! Who knows!

  • Whats the website?

  • This is my first time writing on anything like this so here goes! I'm now 28 and have recently been diagnosed by a surgeon who thought I had an appendicitis! I have been having problems since I was 19 but no one would listen! I am a midwife so have some knowledge in the subject but the doctors (many of whom I work with!) at one point tried to make me think it was in my head! I don't have a stage for mine but it's pretty bad and I was offered the injections but opted not to have them as there can be problems with returning fertility. My wonderful female doctor has recommended I test my fertility for six months and if no pregnancy commence IVF. It's a confusing and terrifying thing to have and I feel so alone my partner and family are great but I must admit it has left me feeling broken.

  • Did they burn any of the endo away? Last year in aug I was in so much pain I couldnt get out of bed and I was referred to a gyni who agreed it could be endo, ahe said give it 6months and see if we get lucky ttc, biggest mistake of my life.i wish I had the lap sooner rather than let it build up even more.its now almost a year ttc and had 1unsuccessful lap and waiting for my second in aug followed by zoladex injections for 6months. I duno how bad urs is and u neva know u may get lucky, I really wish u the best of luck!

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