Endometriosis UK
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Pain without periods!

Hi ladies

I haven’t been diagnosed officially with endometriosis, but after experiencing endometriosis-like symptoms (I.e heavy prolonged periods, bleeding after sex, painful bowel movements, lower abdominal and back pain and bloating) my GP advised me to take the pill continuously without the normal 7 day break. I’ve been taking it since September without a break and it has stopped my periods, however, I am still experiencing the other symptoms.

I have been seen at colposcopy twice and my cervix is normal and they cannot explain the bleeding I experience during and after sex. They did find some polyps slightly higher up in my uterus that they couldn’t remove whilst I was awake. I had a tansvaginal and ultrasound scans a couple of weeks ago to confirm the number and location of the polyps, but frustratingly it didn’t detect any. I definitely know that they are there as I was shown them by the nurse during the colposcopy on that delightful telly screen lol!

I have a consultation with the gynaecologist about these findings (or non findings!) next week, and I’m worried that they won’t take me seriously because the scan was clear. I also feel that these polyps could be connected to endometriosis... but I saw my GP yesterday as I was in severe pain with my back and abdomen and he told me that the two were not connected :-(

Anyway, I’m slightly digressing now! The main reason why I am writing this post is to discover if anyone else has been advised to take the normal pill continuously without the usual 7 day break, but has continued to experience symptoms - such as bleeding after sex, spotting, abdominal/back pain and painful bowel movements - even though their periods have stopped?

Thanks for reading and sorry for the long post!

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Hiya,

I've been taking my pill non stop for about 3 months now but it didn't really even stop my periods! Ended up bleeding heavy for 18 straight days about a month in and have occasional spotting now and again so always wearing liners.

Also taking pill didn't reduce my symptoms at all and they have actually gotten progressively worse so I'm going to seek my gynaes advice after my Lap on Tuesday.

I had 3 clear scans but was told that endo is hard to find on just a scan as it can hide or look like other tissue so that is why such an invasive procedure is needed to find it. It took me a couple years to convince my doctors that I needed help and was only offered to change to different pills over and over until i went to a private consultation.

Hope everything goes okay and that you find some relief, at least you're not bleeding whilst taking the pill through! :)

Feel free to message me if you need to talk about anything else xx

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Thank you for your reply! I went to my GP yesterday is desperation because of the pain, and he also just suggested changing my pill (eye roll!)

Sounds like you’ve had an awful time, I’m sorry to hear the pill didn’t stop your heavy bleeding :( Good luck with your lap surgery on Tuesday xx

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Hey Amy.

Your story sounds a lot like mine. I ended up in India looking for an alternative treatment, found an Ayurveda specialist who told me I have vata dosha imbalance, with aggravation in the apana vata subdosha - the one that controls groins, rectum and vagina. Back pain and all kinds of pain are also ruled by the Vata dosha, as it is the “master” of the nerve system. In the eyes of the Ayurveda medicine, your symptons are completely related, and speak of a dosha imbalance ( the vata one). I would advise you to look for an ayurveda specialist and changing completely your diet and lifestyle. Those usually go halfway on the cure. Right now my period cramps are lighter, my backpain is almost gone but I still cant have sex and feel pain in my vagina ramdomly. Sometimes in my ovaries. It is a long way to go though. I have been on Ayurveda medicines for 2 months, just finishing a full detox and my doshas are still erratic - although slowly decreasing its activity.

I would try this before surgery. And if the pill without breaks is not working, dont take them, or take them with breaks. Dosha imbalances are caused by acumulation of toxins - if u stop your period, you trap toxins inside of you.

Please note I am not a specialist, just someone with the same problem and history as you. I still dont know if this willcure me, but it is good to know that I am trying everything on the planet to make this go away.

Good luck.

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Hi AmyMillie,

I was advised (before diagnosis) to go on the pill for 3 months and have a break...I’d be fine for a month maybe 6 weeks and then get excruciating pain and contractions in the middle of the night and all times of day - all with no bleeding. I spoke to my consultant because I felt like my body needed a period before the 3 months and she agreed that it should be reduced to every 2 months (I couldn’t handle one every month) Shortly after I was diagnosed with endometriosis and adenomyosis - I’d known about endo but not adeno - it may be worth discussing worth your doc? Just be aware that it’s very hard to diagnose adenomyosis and unfortunately it can sometimes only be diagnosed after a hysterectomy.

My diagnosis took 9 years, people not taking me seriously and even referred me to a psychologist because they thought it was all in my head! (Serious low point!) All I can advise is, if you know there is something wrong keep complaining about it and don’t let it go!

Someone will take you seriously and don’t forget you always have the ability to have a second option!

I hope you get a diagnosis soon! That is sometimes the biggest battle!

Xx

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Hiya, thanks so much for your reply. What an awful thing to be referred to a psychologist! I am amazed that there is such little understanding and help available for such a common Illness... I guess I have to prepare myself for a very lengthy process :-/ I’ve been a bit naive in believing everything that the doctors have told me up till recently, but I’ll take your advice and continue to listen first and foremost to what my body is telling me over what the professionals are saying :)

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Once your body has Endo which does not rely on periods and is a complete self able your will find the pain can come at any day of the week. Mine is every day. I am 60, Menopausal. My uterus is creating a 5.5 lining which isn't good. I still produce to much estrogen! They are concerned about uterus cancer now! I look great, I look 45 and very sexy! I'd love some sex but I am in too much pain to get feel at all interested in love making.

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My story sounds exactly like yours. I've been on several different birth control methods over the years, and I'm now on the depo injection which has stopped my periods altogether. But I am still getting symptoms. My GP has said it could well be endometriosis even though I don't get periods anymore. She's reffering me to a gynecologist x

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Hi Amy,

I was diagnosed with endometriosis in October and had it removed. I was then put on Yasmin for 3 months with no break. I bled for 2 months straight and then on and off in the third month, I was so determined to change pill but my doctor kept saying it can take up to three months for your body to adapt to a new pill. I stayed on it for an extra month (so four in total) and the bleeding finally began to stop in the fourth month. I then came off it for a week, it was horrific the pain and bleeding was unbearable. But as soon as I went back on it the bleeding stopped! I'm not saying the same will happen for you but maybe try stay on it and bit longer and see if it improves before changing, it's so annoying all these things take time. Hope it improves soon xx

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