New to this and not sure what to think - Endometriosis UK

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New to this and not sure what to think

lisaj79 profile image
2 Replies

Hi ladies,

I want to introduce myself and ask your opinion.

I am 36, have two sons aged 3 and almost 5, both were normal pregnancies and deliveries. Up til my 1st son, I was on the pill (from the age of 16 I think). My periods were never a problem, I didn't track them because they weren't troublesome and I fell pregnant immediately after coming off the pill. After the birth of my 1st son I went back on the pill for a few months and then came off it and started trying for my 2nd child - this took 6 months. I never went back on the pill after my 2nd son because hubby opted for a vasectomy instead.

My periods became heavier after my first son - I always wore a pad and a tampon but I didn't think much of it and I never had any pain with it (apart from a dull crampy ache a day or two before my period arrived). Over the past 2 years however I started to suffer with ovulation pain which was way stronger than any period pain I have ever experienced, would last a day or two to start with but were lessened somewhat with heat and painkillers. However, the past six months, things have got progressively worse. I still get ovulation pain but it now interferes with my daily life. I am lucky I have a job that allows me to work from home because I regularly have to do this now because of the pain - sometimes it doubles me over and when I get a bad "attack" , once the pain subsides, it leaves me completely exhausted. I say "attack" because on 3 occasions the pain has been so bad, it literally feels my insides are being attacked. Its like my pelvis is filled with barbed wire and every movement fills me with white hot pain.

Aside from these, I now have pain all month long barring 2 days after my period has ended where I am pain free. My periods start with dark brown bleeding the first couple of days before it turns red and its been like that for maybe a year, maybe more however my past 2 periods - there has been no red blood. Just brown "bleeding" for around 3 or 4 days, then nothing. Is that normal?

I also have become super emotional!! Its so unlike me but when it happens, I have a really short fuse and cry easily and even worse, feel really down which isn't something I have experienced before.

The pain I get varies - its mainly in my lower abdomen and pelvis and always lower back pain with it, sometimes its also localised to where the ovary would be and in my waist, sometimes dull and achy, sometimes almost like a burning hot feeling. I have also had on a couple of occasions an awful, debilitating pain when having a bowel movement, I have literally cried out in pain. Yesterday I had ov pains with a pressure going into my rectum.

I am also on a 6 mths course of treatment for recurrent yeast infections that I have just not been able to shift. I have also gone from a size 8 just 15 mths ago to a size 12 (I am only 5ft 1) and I cant shift it!! I have had pain after sex but only on 2 occasions although since this has been happening - sex is a rarity anyway. Headaches are pretty frequent too.

My GP has been brilliant and referred me straight to a gynaecologist - my transvaginal ultrasound was clear , just showed a corpus luteum cyst. My bloods were checked for thyroid and anaemia and to check I was ovulating, all came back fine. I am scheduled for a diagnostic lap in 2 weeks and at the same time, he is doing a hysteroscopy to do a D & C and fit the mirena coil.

Nobody has done an internal.......is this normal???

Sorry for the overload of info and in such a disjointed way, having a bad emotional day, sitting here with my wheat bag!!

Does anyone have similar symptoms?

Thanks for listening

xxx

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lisaj79
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2 Replies

Hi there, I could have been reading about my own history,reading your post. I think it's very common for women to have masked their symptoms by being on the pill for so many years only coming off it to have children and then finding they have these problems.

I am a bit further on down the line than you, having my laparoscopy 18 months ago where they found stage 4 endo and put the mirena in. I had to have further surgery scheduled for 6 months later as the surgery was complex and needed colo rectal surgeons involvement too. Fast forward one year and I'm pretty much pain free. I have however just had the mirena removed as I'm not sure but I think it was giving me side effects like low mood, weight gain, hair loss and constant brown spotting. My gp says mirena is not for everyone but was def worth a try. I'm now just going to see what happens hormone free for a few months and see where I'm at pain wise and period wise.

I would say to you read around this site as much as you can, it's been an invaluable source of info and although I don't wish this awful disease on anyone it's good knowing you're not alone.

You could have a look at the endo diet, see if any food groups make you worse, there are plenty of posts on here about it.

I got rather consumed by endo at one point, it seemed to be the only thing I thought about but after the surgery I started to feel more confident that it had actually worked. Waiting is tough though. All the best to you x

lisaj79 profile image
lisaj79 in reply to

thank you so much for replying. I am really pleased to see there is light at the end of the tunnel - like you, I feel consumed with it while waiting for answers!

I will have a good look around and see what I find. I am just terrified that at the end of all this, IBS will be blamed - it seems it gets the blame for any issues I have had in the past 16 years

x

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