Feeling hopeless

[Mcuk89]

Hi. First time poster here. I’ve been feeling like I need some additional support from people who understand or can relate to what I’m going through and here seems like a perfect place.

Bit of background; I’m 34 F, I’ve had no children and one miscarriage last year. Currently not using any hormonal contraception. I live in the U.K.

I began getting very heavy and irregular periods about 3 years ago after being regular (but heavy) for years before this. This new kind of heavy means soaking through super tampons and night towels within 45 minutes, and blood clots over 3 inches in length and constantly coming. My periods are very painful for the most part now and I can go up to 100 days without a bleed then bleed for up to two weeks. Other times I can have a regular cycle and bleed for 4 days which is less than when I was “normal” - there is no pattern to this.

I have had 3 TV ultrasounds in the past 3 years. The last two have shown a thickened endometrium (most recently 17mm 8 days after my last period). The first two showed a polyp with a feeder vessel but this was not noted on the last scan.

On Thursday I began to experience excruciating pain in my left lower side, I went to A&E and was eventually admitted to hospital for a couple of days. I had the most recent TV scan that revealed cysts on my left and right ovaries but nothing of a size that should have caused the amount of pain I was in according to the doctor. Their main concern was the thickened endometrium which they’ve ordered a hysteroscopy and a biopsy for.

I’m just wondering if anyone has ever experienced anything similar? While I was in hospital I ended up needing morphine to manage my pain. I appreciate they’ve said the cyst is too small to cause that pain but something did and they can’t give any advice about what that may be? Has anyone had a similar kind of pain that wasn’t cyst related or have they had small cysts that have been excruciating?

This has been going on so long that’s it’s completely grinding me down now; it’s affecting my work and my relationship and has me feeling so low and helpless.

Thank you all in advance

[Saju21]

I cant offer any experience or advice but posting to share my sympathies and hope you get a resolution- and dont let the medical staff dismiss your real pain and keep pushing for answers. Have you been referred to a gynae?

[Mcuk89 in reply to Saju21]

Thank you 🤍

I’ve got a gynae referral but not until 2024 - the team at the hospital said they’ve requested it to be expedited due to the circumstances.

They have said the hysteroscopy should be within 2-6 weeks so I’m just waiting to hear when that will be.

[wobblybee Administrator Pioneer]

I’m so sorry..

🤔 You may find helpful info on this link

healthunlocked.com/endometr...

[Mcuk89 in reply to wobblybee]

Thank you! It’s so tricky I haven’t been diagnosed with anything so it’s hard to know what it is I feel like I have a range of symptoms and not sure what they’re from 😢 thank you for your comment 🤍

[Pantyline]

Hello, gosh this feels familiar… I’m so sorry you’re going through this. Some differences with my situation, I’m 35 and I’ve had two kids, and the gushing blood/giant clots started between those two pregnancies (overflowing mooncup and leaking pad within the hour, clots the length and width of my thumb, really scary stuff).

However, even while my periods were regular before and just “fairly heavy” (tampon + pad at all times), I’ve had excruciating pain like you describe, sometimes throwing up in the street/at work, and ended up in a&e twice. The second time I spent two days on morphine until they decided to take out my appendix even though the pain was on my right side! Just shows the scale of suffering. I’ve since heard of another suspected endo sufferer who had a similar appendectomy story.

Now that I no longer plan to have children, I’ve been chasing solutions to never ever have periods again. After some not-fun experimentations with various GPs and my local sexual health clinic last year, I’m now on arm implant + continuous progesterone pill. No periods (huge relief from all the fear and gore and the worse of the pain/sickness).

However I still have lots of tiredness, irritability and bouts of nausea, so I’ve been pushing for a gynaecology referral to get a proper diagnosis and some more informed tweaking of my treatment. So far they only found minor poly cystic ovary on the right side (intravaginal ultrasound), nothing that’d explain the scale of things for me. I’ve also been exploring long Covid and psychological stuff, and the antidepressant is helping me with low mood and feeling less scared and angry with my body. I’d definitely recommend.

I’m not sure how helpful this story is to you, but at least there’s someone else out there with similar symptoms… I suppose for you a big question will be whether you are planning to try for children or not, as that’ll change potential treatment options. Either way, keep chasing and pushing your healthcare providers, and get your partner and friends to support you in this journey. It’s not ok to suffer this much, and you need all the love you can get until you get the care you need.

Best of luck xxx

[Mcuk89 in reply to Pantyline]

Oh my gosh that sounds horrendous, I’m so sorry you’ve had to go through all of that 😞.

It’s so frustrating when these changes happen and you can’t seem to get a ‘why’ - when I went to my GP I was patronisingly told that periods can be heavy as though I hadn’t figured that out in my 30-odd years of life. It’s so worrying hearing how many people have struggled and fought to get help.

My partner and I are hoping to try next year - I had a miscarriage in the middle of all of this and I’m so worried about it happening all over again. I wanted everything to be “fixed” but I’m starting to think that isn’t a likely option.

I’ve gone on to antidepressants during this and it’s made a big difference to my overall mood but I do still have massive mood swings.

Thank you so much for taking the time to respond; I hope you too manage to get help a diagnoses and proper treatment 🤍🤍

[ShyeLoverDoctor]

never experienced this but my friend did. She had fibroids. Very very very heavy bleeding. She was in her late forties and had three children so changed drs and begged for a hysterectomy so they gave her one, finally. Before that her dr refused saying you might want to have more children. The concern is if one of your ovaries gets twisted (torsion) and it’s very painful and they must do surgery right away, or the ovary dies and there will be dead tissue inside. Yes some women do take antidepressants because they get very depressed when they get their period.

[Lizzo30]

Iodine from organic sea kelp will help to reduce the cysts maybe even get rid of them I noticed they sell it in Grape tree today I buy mine on ebayThe other thing to look into is natural progesterone cream which you can buy online it must have progesterone USP in the ingredients Biovea is a good brand

Progesterone moderates estrogen low progesterone may be one of the reasons you had a miscarriage

Lastly drinking coffee helps to thin the lining of the womb best to just drink it in the morning

[Hidden]

This sounds awful, I’m so sorry ☹️ a laparoscopy might be the best option for you, especially if you so have fibroids, endometriosis or adenomyosis (endo and adeno often come together) - a laparoscopy would be gold standard for diagnosis and treatment, particularly if you plan to have children. Sometimes it’s best to treat ahead of trying for children, as the journey to parenthood can be very long (I’m 4 years into it with endometriosis and a cyst from endo). Wishing you lots of luck and some answers xx