My pain hits every month around day 21 of my cycle - peak progesterone. It's always in a similar place (my right ovary), worse at night, keeps me awake, stops me from working and isn't soothed with painkillers, only heat.
I've now had three transvaginal ultrasounds and each one shows tiny fibroids but no endo. I'm in the queue for laparoscopic surgery but as these US tests keep coming back clear, I'm gaslighting myself into thinking my pain might not be as bad as other people get and to just tolerate it.
Did anyone else head into surgery thinking this? It's my worst fear to wake up and learn I don't have endo/adenomyosis.
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TwoSheepOneShoop
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Hi! Unfortunately, gaslighting goes hand in hand with Endometriosis. Most (if not all) of us understand exactly how you’re feeling. Let me be the first to say ITS NOT IN YOUR HEAD.
It took me eight years to get a diagnosis. I had 7 ultrasounds in that time, carried out by a third party at the request of my gp and by a gyne team at my local hospital. 6 of the 7 US were carried out by uneducated individuals not trained to spot signs of endo. Most sonographers sit in this category - they simply aren’t trained enough. Making the scans a waste of time.
My latest was carried out by someone with a special interest in endometriosis, findings resulted in a MRI referral, which confirmed deep infiltrating endometriosis and adenomyosis. I had surgery in August to have endo removed.
Just make sure moving forward that you are seeing their endo specialist or at minimum someone with a special interest. Consultant wise and anyone reviewing scans, it’s shameful how little GP and even gyne consultants know.
Keep a diary of all symptoms, it’s the only way to ensure they take you seriously. Keep fighting for yourself xx
I get this every month for about two weeks now. Its hideous and makes you feel like ripping the blooming ovary out yourself! I do hope you find something that helps. If you do please post on here. I'm trying to manage with 10% ibuprofen gel because I can no longer take NSAIDS as they have damaged my stomach. Thanks Endo! The only other things I can suggest are a tens machine for Endo pain and an acupressure mat. X
It is absolutely not in your head, I had several US and colonoscopies to find my cause and it wasn’t until a private MRI almost 7 years later that someone said yes you have stage 4 endometriosis!
I even had a GP tell me they wondered if it was psychosomatic’ which I had to look up the meaning of. In other words in my head.
I hope this network gives you the strength and support to know you are not alone.
You could be describing my situation too, I’ve had years of an ovary pinging away at different times in my cycle. Now at 51 it’s pretty much constant and sometimes worse. Nothing on US scans, a couple of tiny fibroids, a dominant follicle.
I’ve had years of ‘it’s something else’ and finally the last GP I saw (elderly retired doing part time locum work, had gynae experience) surprised me by saying, well this is no good, it’s affecting your life, your work, your relationship, let’s write to them again.
I’ve been fobbed off for years.
I wrote a long email to the gynae secretary after the last appointment at the hospital, in the appointment said no to any more invasive painful biopsies, hysteroscopies, coils, ablations they seem happy to hand out as all are temporary and all are very painful … but left feeling unheard, and rather hopeless. They say my fibroids are normal. 🤷🏽♀️.
I had a call within an hour, come back in…. also have a private appointment booked in with a senior gynae at bigger hospital to get a second opinion.
Don’t settle, be the awkward customer, it’s excruciating and likely not your personality to do this (it’s not mine I’m a people pleaser) but you have put up with so much. It’s real, it’s a thing xxx
I've had the same with the pain only being excruciating for the first night and then 2 days with various prescribed pain relief not working. But do really try to remember that the body really does send signals when something is not right.
even with being 21 ive had every excuse thrown, its rare because im young, im completely healthy in every other aspect, i shoukd try contraception (ive tried every non-invacive tyoe and none seem to work) but none of these excuses explain the pain they just cover it up and ill always keep pushing for an answer and oushing for others to find theirs.
Because yes pain tolerances are different but you know your body. I've even had a laparoscopy come back clear recently and it's not going to stop me from to get a diagnosis for the pain.
Hey! I completely get this! My ultrasounds came back clear & my pain is only during my period, the rest of the month i’m absolutely fine. Even then, I can still go to work etc, or at least work from home. My periods also aren’t heavy. I also read a lot about how endo can affect so many lovely women every single day, so this info combined with my clear ultrasounds made me think I was going crazy! I pushed (for 8 years!!) as I have a strong family history and just felt something wasn’t right.
I would say no matter how frequent your pain is, if it feels abnormal it’s worth pushing. Clear ultrasounds unfortunately don’t rule out endometriosis.
I was diagnosed recently with deep endo through MRI. I did go privately through Benenden insurance as I was getting nowhere with NHS unfortunately. Have they considered MRI for you? I found NHS were very reluctant to do an MRI as it is expensive and I find that they still work to the old NICE guidelines. The 2024 update to the NICE guidelines now recommends to consider ultrasound and MRI, then diagnostic laparoscopy if these are clear.
You absolutely know your body best. I’ve known deep down I’ve had endo since I started my periods 9 years ago, and it’s been 9 years of me gaslighting myself until I finally got fed up. The way I’ve looked at it in the past year was that regardless of whether I have it or not, I deserve to receive healthcare that follows the NICE guidance and offers me the necessary investigations. It’s so hard to switch to that mindset as the thought of being an unnecessary burden does try and take over, but your health is more important.
Sending so much love, it’s so so hard! Also happy to give details about the Benenden insurance I used - it’s quite literally been my only saving grace in all this!
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