What Is Happening To Me

[emmatowny]

I have had period issues for the last 10 years. Constant pelvic pain, painful periods, sex and bowel movements. I had a lap in 2017 where they didn’t find anything wrong which was so disheartening and i thought i was going crazy. I have had to just live and cope with my period problems since my lap and to just ‘get on with it’. The last couple of years my periods all of a sudden became regular but still painful and heavy but nothing like they were before, so i coped well with it. Fast forward to 3 months ago, my cycles changed to over 40 days long when they were originally every 33 days and i have the following symptoms.

- I get brown/pink heavy discharge for when my period was meant to be due (33 days) with all the symptoms that my period will start. Insane cramps, headaches, emotional, sore boobs. Then i won’t actually start properly bleeding until 7-10 days later. So i have symptoms of being on my period for around 2.5 weeks, and its hell.

- Extreme pain when passing urine or opening my bowels in these 2.5 weeks along with leg pains, constant dull and heavy feeling in my pelvis and severe bloating.

- My mental health is at an all time low in these 2.5 weeks. I cry every day, whether its because i’m in pain or because i feel really low. I have low libido and sex can be painful.

- Pelvic pain everyday for the last 3 months, some days its so minor but other days its extreme. I have painful ovulation anyway.

This has happened for my last 3 cycles, i’m currently ‘6 days late’ and on day 39 of my cycle and i’m laying wide awake at night in extreme discomfort.

I have an abdo/vaginal ultrasound on Tuesday but i’m just so worried they will tell me that nothing is wrong with me like they did back in 2017. Something isn’t right and i don’t feel like me right now.

I’m not on any hormonal contraception and i’ve done pregnancy tests every month. I get married next month and we want to start trying for a baby next year but I’m worried my irregular cycles will have an impact on trying to get pregnant.

I’m just wondering if anyone has had anything similar? I feel like i’m going crazy.

[AllthatGlitters]

hello have you had an MRI to check for adenomyosis? I have very heavy painful prolonged periods & I have adenomyosis x

[emmatowny in reply to AllthatGlitters]

Not yet, only just got in for a ultrasound next week which i know doesn’t show much so i’m hoping to push things along for an MRI x

[Clarabellapp in reply to AllthatGlitters]

I had adenomyosis which showed up on an MRI and on an ultrasound. I lost so much blood that my blood count became dangerously low. I went to A&E and they arranged an appointment for an MRI a few weeks later.

[Tangoandmax]

Hello, was your previous lap carried out by a specialist? If a general gyne department at a local hospital, all sorts can be missed. Same goes for scans. Unless it’s reported on by someone with a special interest/or is an actual specialist, they’re likely going to miss on an ultrasound unless you have endometrioma on your ovaries - as cysts are obvious to them. An MRI is much better but again the right people need to review the results.

It took me eight years to get my first lap, I had ultrasound after ultrasound which all said everything was normal. It really wasn’t. If you know something isn’t right, keep fighting/pushing. Complain if need be, ask for a second/third opinion. It’s been like a second job for me the past two years to get to this point, and I wouldn’t be here without numerous complaints to PALS.

All the best xx

[emmatowny in reply to Tangoandmax]

No it was at a gynae department in Birmingham, not a specialist! I have been told that before but i was so deflated i didn’t fight it 🥲 I’m now a midwife in another hospital and i’m quite friendly with some of our obs and gynaecology specialists so i’m hoping i can try and cheat the system to get in with them🤞🏻 I will keep fighting thank you!

I’m so fed up, this has been going on since 2014 (17 years old!) and i’m now 27 and i’m at the point where i want to start trying for children but I’m petrified. I was referred to a pain clinic when i last went through all this in 2019 and they said it could be in my head/my mental health so i had lost all hope with doctors!

[Tangoandmax in reply to emmatowny]

It can be about who you know, so absolutely use that if you have to! Especially if they see how much you’re struggling day to day. We’re really backed into a corner with this, it’s a shame but you have to use what you can.

My problems started 2017, it was in my head/IBS/water infections all sorts. The gaslighting is so bad that even after the MRI confirmed Endo/Adeno I still went into the lap thinking I’d wake up to everything is normal. It’s unacceptable!

Please don’t lose hope. Don’t blindly believe, I did for years and it just left everything to progress and get much much worse. We also don’t have children yet, we’ve not even been able to contemplate them as we haven’t been intimate for years due to severity of pain during intercourse. They said that was in my head, I was tensing and causing the pain. They only took that seriously when I couldn’t endure my smear last year. Turned out organs were stuck to one and other meaning pain would be excruciating.

My advice is honestly get angry. It’s their job to investigate, find the reason and treat it. Hold them accountable xx

[JOSANDY40 in reply to emmatowny]

The problem with pain if you have pain often enough pain becomes a memory. So when you feel pain the brain will tell you its bad so it will be! The brain learns to react to symptoms, labelling them. So you need to find a way of breaking the cycle of recall. Perhaps consider hypnosis. Change your pain meds, add Antihaistmes, Fennel Tea or Belladona for cramps. Reflexology to help the body and relax. Hypnosis may help too. You do need another referral to a Endo Specialist/ Endo Clinic who can diagnose you fully. Perhaps a rest bite from periods.

[SeaHorse6]

Those definitely sound like they could be endometriosis symptoms to me... I can really relate to what you write about the horrible build up to a period with cramps etc that lasts over a week. So many of us with endometriosis didn't have anything show up on ultrasound, and I feel that even at laparoscopy endometriosis can be missed. I had surgery with a specialist last year and she said that my endometriosis didn't look typical, but she excised it anyway and then the biopsy confirmed that it definitely was. That's terrible that you were told it was a mental health issue! I also felt totally patronised at my last NHS gynae appointment, so many of us are having to put up with this 🙈 - keep fighting for the answers you deserve, you're not alone. Wish you all the best x

[Ebdex]

I agree with all the above advice but also wondered what hormonal contraception are you taking? Progesterone contraceptives gave me some of the same symptoms you are mentioning.

[emmatowny in reply to Ebdex]

I’m not on any hormonal contraception x

[CitizenErased]

This sounds sooo similar to what I've been going through for the last few years. You're not insane. It's not in your head. You know what isn't right for you. I was dismissed by doctors when I told them my normally regular cycle was getting really erratic and much longer between periods. I was told it was normal. Then the pain and a whole host of other symptoms started. Once I had a heavy period that lasted three weeks and I was crying from the pain in the GP office, one doctor took me seriously. I had a TV ultrasound that showed nothing. Unless that person is specially trained, they won't find much on there.

I've just had an MRI which apparently shows endometriosis. So please don't give up. I nearly did so many times. I nearly gave up when the docs ignored me. I nearly gave up when the first gynae refused to give me an MRI. But now it appears I am vindicated.

Ask to be referred to a gynae, ideally one at a BSGE centre. Don't stop asking until they do it.

I hope you get some answers. In the meantime, everyone here is super supportive, so keep talking to us if you need to!x

[emmatowny in reply to CitizenErased]

Thank you so much, i will keep fighting xx

[Jazzransom]

Hey, so sorry you’re going through this. All the symptoms sound so familiar. I did have Endo and had it removed, but symptoms keep coming back and they tell me it’s not the endo returning ‘some women just have chronic pelvic pain’.

I wanted to add on a positive note - I was also so worried about being able to conceive. My cycles were all over the place and I had daily unexplained pelvic pain, but I tracked daily with ovulation tests and it worked really well (for us) - we fell pregnant quickly. I know it’s not groundbreaking and loads of people use ovulation tests, but it can be expensive and put people off so just wanted to put it out there! There is hope! Make sure they check your ovaries and fallopian tubes in the MRI! Do push for one, it will give you a clear picture. Xxx

[emmatowny in reply to Jazzransom]

Thank you so much for the reassurance! xxx

[BloomingMarvellous]

I was told for 40 yrs it was in my head. It wasn’t. Endo and adenomyosis. Wasted my life , sent down useless roads of exploration and treatment. Stand your ground girl. In the meantime arm yourself with self care . Heal Endo by Katie Edmonds is a useful place to cushion yourself with both book and @heal-endo -even if it’s not the issue the general advice is great

You totally deserve better .

[emmatowny in reply to BloomingMarvellous]

40 years! Thats awful, i’m so sorry!

Thank you for the advice xx

[Bakewey]

I spent a good few hours yesterday watching endo/ hysterectomy videos on YouTube; so many women going through the same as us here…

Bottom line, as the others have written, you know your body - if you think something is wrong, be the squeaky cog’ until you get the care you need.

You also need help with sleep. I download TIDE, bought nytol, lavender for bath time ect, ect. When I manage to sleep life seems better. It may be worth asking your GP for something to help you get a few hours rest.

Wishing you a happy marriage…

[Cocoacupid]

hun I would see if you can get an mri as this sounds so much like endo and it sounds like you could have endo in the pouch of Douglas which can make bowel and passing urine very painful. Do you know if the surgeon who did your surgery was an endometriosis specialist as if in pouch of Douglas it can be hidden under what could look like healthy tissue. This is how it can be very much missed. Your pain is very real. See if you can get the mri as they are more in depth than other scans. Also unless they specialise in endo your scans could show as normal as that was what happened to me until I had my lap. Then I felt validated . I also have fibromyalgia due to suffering in pain for 28 years xxx take care. Also on Facebook a group called endometriosis guidance and information group lots of advice etc on there. X

[emmatowny in reply to Cocoacupid]

The surgeon wasn’t an endo specialist Thank you for all your advice! I’ll keep fighting! Xx

[Shabs2024]

A ultrasound didn't show much in my case. I was in extreme pain similar to what your describing.. I had to get a MRI done privately as Gp wasn't helpful. That showed stage 4 and gp has done an urgent referral for Gynae.

[emmatowny in reply to Shabs2024]

Thank you for the advice, could i ask how you went about booking a private MRI? I will see what the say tomorrow for my USS but not getting my hopes up they’ll see anything. I’ll keep fighting x

[Shabs2024 in reply to emmatowny]

I went online and booked with a company called Vista. They requested a letter from my gp as to why i felt i needed a mri. Gp charged to do this, but it was worth it. I got all the answers with this scan and finally they took me serious.