I have now been diagnosed with endometriosis and PCOS!! anyone else manage to have both of these?

I didn't think think these two things would/could occur at the same time? I have been diagnosed with endo for 11 yrs since I was 19, I have had 4 surgeries with very good surgeons. Surely one of them would have said something about PCOS? We have been trying for a baby and I came off the pill 8 months ago and still no period we have seen the IVF clinic and they say the cysts that I was told were endo cysts are actually PCOS and the hormone tests confirm it. Just think my luck can't get much worse!

Anyone else had both of these together? How have you managed it?

16 Replies

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  • Hi there,

    I have also been diagnosed with endo and pcos. When i was first diagnosed with endo at 18 they told me that it was unlikely I would have cysts on my ovaries. But after many months of hospital trips they finally looked and diagnosed me with pcos aswell. I'm on all sorts of meds to try and keep everything under control but nothing seems to be working for me at the moment. It would be good to hear from you and your experiences, as I know noone else who suffers from the same as me,

    Keep strong and take care

    Holly xx

  • Hi, thank you for your reply. At the moment I am only on painkillers as we are trying for a baby, but I have been off the pill for 8 months now and still not had a period. I have been on the pill most of my life trying to control the endo so I don't know if its normal to go that long without one. Its certainly frustrating that I have spent my life trying to stop my periods and now I want one I can't have one! What sort of meds have you tried to control them both?

    Hope your as well as can be :) x

  • Hi, I was diagnosed with endo and PCOS when I was 24. Have had 6 laparoscopies and in the process of removing the cysts they have removed some of my ovaries over time. After years of meds I have found homeopathic meds the best. Have even managed to reverse early menopause at 35. I can totally sympathise with trying for a baby and being in pain and having your hormones up the creak.

    I was prepared to try anything none invasive so tried the homepathic route and it worked for me. Unfortunately with the reversal of the early menopause the endometriosis is back. But at least I am not on HRT at 37:-)

    For leg pain the thing I found the most effective is Slow K (magnesium), especially at night. One every now and then when your legs are aggitated.

    Kate

  • Hi, i suffer from PCOS and they beleive i also have endo too, im waiting for my lap, and been signed off of work for ages because the pain is unbearable, and stops me from doing alot as alot of the pain is down my legs, on my bum my hips and up my back and sides, and i also have cysts on both of my ovaries, i know how much of a night mare it is!! ive been in and out of hopspital for 6 years now and they have only figured it all out! I was put on the pill in august and it made me constantly bleed for 3 months! i was also taken off my metformin, as they thought that was causing my pain, and now im suffering even more. im in the middle of writing a complaint to my hospital as they have mucked me around so much (if u read my blog 'my life with chronic pain' its all explained in there!!) hope this site is helping you!!

    Amy

    xxxx

  • Hi, I also suffer from PCOS and was diagnosed 9 years ago, I have been on Metformin for 8 of those years and would put up a huge fight if the doctor tried taking them off me, I take 4 a day. In may I had a laparoscopy and they found I had endomitriosis and the pain you said you have down your leg is exactly what I had and was becoming unbearable. I can't take HRT as I am allergic to the synthetic hormones in them so my specialist recommended a mirena coil which puts the drugs directly into my womb, I had it fitted in november and although the procedure to fit it was fine and very quick, the after affects have been really bad as I have bled for 3 weeks very heavily and the pain in my abdomen has been double the pain I had before, they did say that it can take 3-6months for your body to get used to it, but being very active the constant pain and heavy bleeding is preventing me from getting on with my normal day to day activities and I'm now wondering if it is worth getting it removed when I go for my 6 week check.

    Dionne xx

  • Hi any update on your condition? As I'm in a lot of pain and still trying to get diagnosed. Thanks x

  • Thank you so much for sharing, it heps just to know there are others out there although I wish there were none of us at all :) I have not tried homepathic remedies as I have always been on so many things for the endo that I didn't dear try to add anything else to the mix. Plus they can be very expensive.

    I am waiting for my 5th surgery at the moment and waiting to speak tot he consultant again about this lack of periods, it just so out of charcter for my body. Its normally the other way round, I can't stop the bleeding even when I had the merina coil and was taking 2 cerezett pills a day!

    Marie x

  • Another one here! I was finally diagnosed with pcos about 5 years ago, only very very recently with endo. Couldn't quite understand why my weight loss was making symptoms and pain worse - turns out it wasn't the pcos, I've got 3 endo cysts on my left ovary and suspected endo elsewhere. I'm booked in for a lap in 2 weeks to see what's going on and hopefully treat what they find. Oddly, my cycles are now the most regular they have ever been in my entire life, but the pain is something else!

  • Hi I have both endometriosis & PCOS. I was diagnosed at 27 years old after suffering huge weight gain in a short period of time. I have got children so don't give up. I have 4 boys, but we tried for 6 years for the 3rd one. I had about given up then I tried metformin and with that and some weight loss I feel pregnant. I was monitored throughout my pregnancy by a wonderful dietician who also had pcos so she knew exactly what I was going through. Metformin helped me with my pregnancy to fall pregnant so may be it may help you as well. It may be worth speaking to a consultant who specialises in PCOS as they know what they are talking about, but also try Verity as they are a charity that deal with PCOS & there are usually answers about endometriosis on there too. Hope you fall PG soon x

  • Hi-

    I have both as well. Recently diagnosed after my lap. I am trying for my second child (first one conceived naturally, despite same symptoms) and this is proving to be a bit mroe difficult. They have given me metformin and clomid and currently on round 4 without any luck. Wish you lots of luck! x

  • hi im 22 and i was diagnosed with PCOS a year and a half ago my pain and symptoms are just getting worse and worse by the day my doctor has scheduled my surgery for next month to check for endo and he told me that PCOS can often cause endo. i dont know if endo can cause PCOS or not... i dont know if this helps clear anything or not... my first visit to the ER they told me it was all in my head thats when i went to my gyno and was then given the PCOS diagnosis so maybe you had PCOS first and it was just never caught???

  • I've been diagnosed with both endo and pcos and I'm just 18. I got endo when I was 16 they took me into surgry and took what they could out. Then they tried the pills but that wasn't helping at all then they put in a special mirena just for it and it was helping then along the road when I turned 18 I went into my gynos and they did a check to see if it was still in the right spot because I was having terrible pains and when they checked he told me I had pcos. It's been quite hard learning that I have two things that make having a child hard. Especially sense I want to have one one day. It's hard seeing all my graduated high school friends getting married and pregnate knowing that one day I may not be able to have a child at all.....

  • Hi there-

    I was diagnosed with pcos at 16, and the pain and frequency of my cycles was unbearable. After 6 more years of dealing with doctor after doctor, I found one willing to listen to my symptoms and try something other than just another pill. It took another year of trial and error to get me to the point of having a lap done and at that point in time I was told pregnancy was going to be hard for me and that the longer it took for me the less my chances of a natural pregnancy would be. I have been officially diagnosed with both diseases for 4 years, but I have good news for anyone going through this pregnancy is possible even without the extra drugs. I found the best way to approach it was, if this is meant to be I have to take care of me first so that my body can handle the stresses of pregnancy and child raising. Talking to your doctor about all of your options and making sure you are on the same side is key to getting the right help for you. Everyone's experience is different and I have hope that you will get to enjoy being a mom at some point.

    As for the missed periods after being on the pill for so long, don't freak unless our ob does, most of the synthetic hormones in BC pills take time to work their way out of your system especially for those of us with an imbalance like that of pcos. Stay focused on positive things and keep your eyes on what is important to you, listen to what the doctor recommends and take lots of walks. One to clear your mind and two to help work the muscles around the lower abdomen.

    I hope I was of some help to someone going through this with me.

  • I wasn't taken to a Dr until I was 16 although I was struggling since I was 12 after pushing me to go on the pill and family pressure of not going on it I finally got a referral to a private hospital where a doctor decided without explaining anything that she was going to operate on me in 3 days. This was when I was 23. I couldnt walk properly for over 6 months after it. And even now in my left upper thigh I experience pain and unbearable discomfort to the point where it disables me most days. Two years ago when getting a bone density scan because I have osteoporosis they picked up on the polycystic ovaries. I'm 30. I do not wish to have children. Will they take my baby box out? I've been asking since I was a teen. Then as an adult I gave up because they said it's not something they would even consider because of my age but time and time again I'm being told how severe my endo is. And the pain is disabling

  • Hi. Have you been diagnosed with anything ? I'm really struggling with mine atm. Still not been diagnosed but I'm in unbearable pain. I have pcos and think I have emde aswell x

  • does anyone know if any of the symptoms found in someone suffering from pcos can also be found in people who are suffering from endometriosis as my older sister is a pcos sufferer who is in and out of hospital nearly every month and the DR's/nurse's who see her all say the same thing that they can't do anything for her as it's the pcos that's causing the pain but I have a feeling she is suffering from endometriosis as well so if anyone can answer my question it would help me a lot thanks

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