Has anyone experienced anything similar? ... - Endometriosis UK

Endometriosis UK

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Has anyone experienced anything similar? To put my mind at ease.

Nm1993 profile image
4 Replies

I'm sorry I keep posting questions, I'm just really anxious at the moment.

To cut a long story short, I've always had long periods, 7 days heavy bleeding. Nothing overly painful, typical cramps, diarrhea and just uncomfortable. As I've gotten older (27) and had my second child my periods have just gone crazy

Leading up to having my second child, my periods were getting closer and closer together, but once I fell pregnant it became a distant memory. Flash forward 3 years and I have had nothing but intermnestrual bleeding since I had my second son. Its progressively gotten worse over the past 3 years, I was treated for a cervical ectropion last year (bleeding continued after treatment) was given a transvaginal scan which was clear It's come till the point now, were it's almost a light period/heavy spotting for 10+ days and then about 6 days of a period. (what I'd consider to be a period) I'm just a whole mess of anxiety at times, I've gone back and forth from the doctor.

I have pelvic pain throughout the month, it's nothing horrendous, but it exists. It's been like this for over a year now, alongside lower back pain and pain going down the backs for my legs. Which, is definitely worse during my cycle. And the strangest pelvic gurgling sensation and bowel issues between struggling to go, to constantly going and nausea. Which, up until have my second child was never an issue for me😬

Has anyone experienced anything like this? I've spoken with my GP at length, over many months and as the symptoms are consistent and I feel like they're getting worse/more dominant. I have been referred back to gynae and for a pelvic CT scan. Obviously with all the covid business. No one knows how long it'll take, weeks, months. I've priced private gynaecological care but it's just not feasible. Price wise. I'm 27, and alongside all this I struggle quite badly with anxiety and the constant aches and pains, I'm just so stressed and I just am so afraid it could be something awful. Like cancer, and the GP is reassuring with my TVS being clear a year ago and my ca125 coming back normal but I just can't shift this worry. Ive been tested for so much, bloods left right and centre. Suspected to be a thyroid issue. Which, unfortunately, it isn't. I just need to know and its the not knowing that's feeling me with even more fear. Has anyone, experienced anything similar, at all?

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Nm1993
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GrittyReads profile image
GrittyReads

Ultrasound scans, even transvaginal, do not show endometrial tissues ... which is what this sounds like: with the endo possibly in difficult places - hence the pain etc. Normally, your GP should refer you for an exploratory laparoscopy, which should be done without removal -etc. It should be done, just to see what's there, with a referral to a specialist team if endo is found in 'difficult to access/remove' places. [NB sadly - still - lots of gynaes will remove obvious and easy-to-access, endo tissues at the first lap ... which is not a good idea, as often they've missed the worst kinds, plus a lot of the 'easy-to-spot' kind, just grows back}. This not supposed to happen! You should be referred for later surgery ... AND with an 'Endo specialist' (= BSCG) team, if any of the endo tissue spotted, on the initial lap, is the difficult type, or is in hard-to access/remove-places.]However, given Covid, I imagine most 'typical endo/period' pain issues are way, way at the back of the queue (although they probably always, already, were). However, over 10 years ago, I was in a similar situation to you, and I paid to see a private gynaecologist, for a general discussion and examination. He was then able to arrange an NHS op, which - in my case - was just to have a coil fitted (I was already pre-menopause, and they felt this would see me through the menopause - which it did: blissfully pain-free). [NB: this op is almost certainly not what you will need, as it sounds like you may need a full laparoscopy.] However, it may be worth trying to see someone privately - just the once - just to get a foot on the ladder. It's a long shot, but may be worth trying, just to get that first referral to a more specialised 'Endo' team.

Otherwise, try to insist on your GP referring you to a specialist 'endo' team, rather than a general gynae. I know with Covid, not much may happen for a while, but it is worth trying to get the process moving. Also, try to find out if any of your GPs are more familiar with endo, and ask to see them. Hope this helps, take care.

LME5 profile image
LME5

Hiya. I'm so sorry to read about your experience. It's so difficult not to feel anxious when even doctors don't acknowledge your pain and suffering until you're absolutely desperate!

I can't comment on menstrual issues post-childbirth (I don't have any children) and I haven't experienced continuous bleeding like that, but it's great that you've been referred to a gynaecologist and for a scan. Hopefully, the scan will unravel the cause of the bleeding.

As for constant pelvic discomfort, I've been there! And I'm not surprised you're experiencing it given your situation.

With my endometriosis, I have experienced bowel symptoms like yours. They started as constipation and then evolved to the opposite of that, constantly needing the toilet! Endometriosis is commonly found on the bowels due to the location...

However, bowels can be generally affected when we bleed for a period (something to do with the hormonal changes that occur - or so a gynaecologist advised me). Given that you're experiencing more bleeding than normal, your bowel symptoms could be linked to that.

All in all, you've taken the right action - follow through with the referral and have your scan. Don't play down your symptoms at all. Once they've checked you out you should have more answers. If they don't find anything from the scan, push for further testing.

Good luck! And try to keep yourself calm (as hard as that is), stress only aggravates your symptoms.

xx

Nm1993 profile image
Nm1993 in reply to LME5

Thankyou ❤️

I'm just patiently waiting for the confirmation of my referral in the post, trying to distract myself from it all. My GP has started me on cerelle in the hopes that it will regulate the bleeding. As that's a huge stressor for me lol

LME5 profile image
LME5 in reply to Nm1993

Of course, bleeding is stressful! I really hope you get that referral soon (don't be afraid to chase your GP up about it if you feel it's taking too long, regardless of covid).

Also, I'm not a nutritionist, but from my reading on women's health I highly recommend complex vitamin B supplements and magnesium to help with your nerves xx

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