Endometriosis, PCOS and first ever blog!

Hi there, I've suffered with endometriosis for 4 years now. Just when I start to think it cannot possibly get worse, I have a blood test to check my hormones as me and my fiancé are trying for a baby (with no luck) see the Dr today and she tells me my hormone levels are very high along with other symptoms like weight gain and hair thinning, acne and pain. Its probable that I have Polycystic Ovary syndrome too. Well that's obviously great news. Back to the Gynie specialist I go!!!

This is the first time I've joined a group like this, or wrote a blog. I don't know anyone else with either of these diseases never mind both. I'd love any advice or feedback or any glimmer of hope even from any of you.... Even just to know there's someone else in the same boat would be nice.

Sophia, xx

11 Replies

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  • Hey, don't want this to sound bad but I am glad I am not the only one!! I was diagnosed with endo 5 years ago which is getting worse and pcos about 5 months ago! In for a lap on Wednesday will be the forth and last one!!! My cons has agreed to be the last one and as me and my husband are trying he is going to put me on clomid as he believes it will be best chance! I really do wish the best for you!!!

  • Aww I know I feel horrible saying "thank god theres more people like me!" ha.

    Ive not seen my specialist yet, as I was only told today by my G.P. don't really know anything about PCOS. Scared though. Everyone keeps telling me not to worry that I'll be able to have a family when im ready... OBVIOUSLY think theyre all insane living in a dream world because no matter how positive you try be every once in a while I get scared I might not. But VERY hopeful after seeing so many posts on here that with intervention many people did!!

    Ive had four lap now. Horrible things, got a really bad infection last time. I hope I don't have to have yet another! :( Good luck for Wednesday though! hope you have a lovely husband ready to take care of you!! :D I really hope the clomid works hun!! you'll have to keep in touch and let me know how it goes and how the drugs make you feel!

    Thankyou for getting in touch though!! really cheered me up xx

  • Hello and welcome! I'm a endo and pcos chica too!

    I would recommend the Verity website for information about PCOS. The good thing with PCOS is that women are often fertile longer, and despite popular thought it doesn't statistically reduce chances of having a baby - just takes a bit more time. If you have irregular cycles or don't ovulate (providing your tubes are ok) clomid is really good and is cheap (so good for self funders) and relatively easy to use. Metaformin and avoid white carbs and sugars are also really good for pcos and have a knock on effect of increasing pregnancy by reducing BMIs and improving ovulation regularity (bad for pain, good for baby making!)

    Good luck honey x

  • Hey,

    Same with me diagnosed with pcos 2 months ago Endo on Thursday just gone, most people with Endo have pcos cause the Endo tissue bleeds every month like the tissue inside the womb, how ever because the tissue on the outside it has nowhere to go this causes cysts to form so it's all part of the endometriosis disease I'm sorry to say my dear.

    Hope this is some help to you

    Xx

  • Thankyou! nice to hear about PCOS from people who actually have it. Googling it all didn't really help much to be honest! just scared me even more lol. I didn't realise they went hand in hand though, thought I was just a freak who had to be greedy and have them both!! ha.

    Thankyou for the advice, especially the diet advice!

    I had some hormone injections to put me into the menopause a while ago, and they made me put on 4 and a half stone in 4 months! even though I didn't change anything else about my lifestyle! even now after ive stopped the injections 12 months ago Ive fought like heck to get the weight off and its almost impossible!! I went to my nurse for a blood test to check my hormones have actually started working since my periods are more irregular now than ever, had 4 in the past 19 months. Definitely determined to get this weight off. Being heavyer has definitely made it even harder to cope xxx

  • I'm another with pcos and endo. I also don't know anyone with both! Diagnosed with pcos in 2003 and endo 2010. Don't give up hope I have 2 girls one born in 2001. before my daughter my periods was regular but painful and never right after my daughter was born as time went on they was pretty much non existent so my hopes was low to having another baby. Anyway I came off the pill and a few months later I had slight spotting (couple of drops) for 2 days not even a full period and surprising I conceived I was shocked. I had my 2 nd daughter in 2012. I know it's difficult and takes time but fingers crossed for you. My endo is graded 3 nearly stage 4 so it quite severe I now have a mirena coil and prostap injection and yes I've put on weight too it's a battle :(

  • Wow congratulations! Great to hear so many people manage to conceive with endo and pcos when I was told yesterday I had it I panicked and thought that it meant I had no chance whatsoever now. Thank you xx

  • Hi- I don't often comment on posts, but wanted to this time. I have endo and pcos- both diagnosed when I was unsuccessfully trying for my second baby. However, I am sure I have had both conditions for a long time before diagnosis. With my first baby it just took us a while, but my second girl took almost 2 1/5 years of trying. After my lap I was put on clomid and metformin- the metformin made me feel really sick to start with but I think was worth it in the end. It took around 8 months of clomid for me to get pregnant and by that stage I had almost given up hope of anything happening. Although not much overweight I did lose some weight and started eating better. The month that I fell pregnant I had been taking some herbal supplements given to me by a herbal practitioner. Although I was quite sceptical about taking them I felt it was worth a try and who knows whether they had an effect or whether we were just lucky with clomid but something worked! I now have two beautiful girls so do not give up hope. The pcos can usually be controlled quite well with drugs- I think the main difficulty lies with endo and where it is. I wish you the best of luck with your family and hope it does not take you long to get there!

  • I too suffer from both Endo and PCOS. I was diagnosed with PSOC when I was 19, which is 26 years ago now and Endo when I was 33. I was on the pill since 19 and was told that I would not be able to conceive naturally. So basically I never tried for a family. I got married at 39 and came off the pill. I owed it to my hubby to give it a try and to my amazement, after only

    Two months I conceived. We now have a beautiful 5 year old daughter and believe me, with all my problems and being told I couldnt have kids without help, I couldnt believe I was pregnant.

    My Endo has come back with a vengeance and I have a Lap in two weeks.

    Dont give up though. Miracles do happen, I should know, I have one.

    Good luck with everthing xx

  • I know it's a bit late to respond but thought you might still be checking responses. I just had a laparoscopy for endometriosis and to remove ovarian cysts and am about to start IVF. I write about my experiences on a blog mindfulmumatobe.co.uk and everyone is welcome to join our support group. I am a volunteer for the infertility network UK ( their health unlocked forum is very good, but not many people post on there at present so we have a secret Facebook group to chat on) mindfulmuma@gmail.com

  • I just joined, and I'm not in the UK, but this blog spoke to me. I was diagnosed with endo when I was 17. I had three lapos. and a combined four years of lupron treatments before I had a hysterectomy three years ago. I was 30. I never had kids. a few months ago I was diagnosed with PCOS. I thought I was past all of this. I'm just scared.

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