New member: Hi, I hope it's OK to post here... - Endometriosis UK

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Starrling profile image
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Hi, I hope it's OK to post here as I have not received any diagnosis yet but I am pretty scared. Sorry it's long but thanks if you take time to read. I don't know exactly what's relevant to include you see.

I am 40 and a mum of 3. My kids are 17, 16 and 6. I have had heavy and painful periods as long as I can remember but just assumed it was normal. My moods get very VERY low during my period though so whenever I did seek medical advice, that was always the focus and I would be given antidepressants to try and sent on my way.

My periods got especially bad about 4 years ago. It felt like a vice was gripping my insides while an angry bear ripped and tore my organs. The pain would take my breath away but it wasn't constant. I also got pretty severe backache, sometimes finding it difficult to stretch it out in the morning but put that down to my active job. I wasn't overweight, I was still within a healthy range on the BMI calculator BUT I was heavier than I had ever been with bloating and excess weight that despite an active job and 3 kids to run after, I just couldn't shift.

I went vegan about 3 years ago, the bloating and pain diminished and finally shed my excess weight. So I assumed my previous symptoms had perhaps been the result of a poor diet. I felt amazing. Then came lockdown. I was no longer as active, no school runs to do, shopping mostly done online and I had returned to full time education, starting university as a mature student. All classes, lectures were online so when the bloating returned, it seemed perfectly logical to put it down to the less active lifestyle I was now leading.

The past few months I've been getting a dull throbbing in my left hip and lower back, together with periods that aren't as regular anymore. Sometimes it's a 29 day cycle, others it's 23 or 26. I also had spotting in between on one occasion. My moods are erratic and I seem to just cry at everything whether it's happy or sad. I was excited, thinking it was perimenopausal symptoms and my monthly torment was coming to its natural end. I went to my gp who was a female this time and she was a lot more thorough than the others. She ordered bloods, examined my tummy and also did an internal examination. She said she noticed a thickening when she was checking my cervix and that it looked inflamed. The swab came back clear though, no infection. My bloods showed an elevated level of some hormone produced by my ovaries (forgive me, I don't know the name) that she said would be raised in pregnant women (I am not pregnant) women about to menstruate (I was only mid cycle) or with some conditions such as endometriosis. I have been referred to gynaecology but in the meantime, I was booked in for an ultrasound. I had both types if you see what I mean. One transvaginal and one over the top of my tummy. The lady performing it wouldn't tell me anything BUT she asked me kind of midway during the scan if I was getting treatment for endometriosis. I thought it quite an odd thing to ask just out of the blue so maybe she did see something? She did also tell me she spotted a fibroid but she was unable to tell me anything else. Results take 7 days I was told by the hospital and my gp. After a week went by (which was last Friday) and I hadn't heard anything, I called my gp yesterday to check for any updates. The receptionist told me it can take up to 5 weeks sometimes (why do they always sound so happy to disappoint people by the way? 😂) and to try again at the end of the week. So now I'm currently enduring what has turned out to be an 8 day period, in pain and reading horror stories about what could be wrong with me instead of working on uni stuff. I'm scared shirtless and can't focus. Do these symptoms sound similar to any of your experiences? And if it is endometriosis, what is the next step?

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claudia_91 profile image
claudia_91ModeratorEndometriosis UK

Hi Starrling

Firstly, you are very welcome in this community! As you are probably more than aware, endometriosis takes an average of 7.5 years to diagnose, and the forum is here to help support people with endo-like symptoms to get the treatment that they need. That includes you!

Thank you for sharing your story. It sounds like you have had a really rough road. As someone who has journeyed down a similar path to you, I can really relate to a lot of what you have described.

It sounds like you have got the ball rolling already with your ultrasound scan. I would suggest calling your Doctor's surgery again next week to ask for your results, there is no harm in checking whether they have received them sooner than 5 weeks.

We have a lot of really useful information on Getting Diagnosed on the Endometriosis UK website: endometriosis-uk.org/gettin...

This includes a page on how to prepare for your appointment with your doctor, and what will happen next. Hopefully you'll find the resource helpful 😊

Starrling profile image
Starrling in reply to claudia_91

Thank you Claudia. I've now had my ultrasound results. My left ovary has a 5.2 cm cyst and a two smaller complex cysts. My gp says it looks like endometriosis but as my CA125 was at 66, and still elevated during repeat bloods, they can't rule out anything more sinister until I've had further tests. I also have a large fibroid in my uterus. My appointment with gynaecology has been scheduled for next week.

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