Does this sound like any condition, e.g PCOS/endo?

[LLBandTTC]

Hey 👋 so have been back and forth to doctors about this and I have only got as far as being given tramadol on repeat. I have had 2 scans in the last couple of years (had to beg for those) and they were clear, but I know my body and know something’s off. I was supposed to get a colposcopy last year but the referral switched to a different hospital who refused to do it because I’m under 25 (the whole point I was referred for this was to surpass the over-25 limit for smears

)

Anyway, here’s my history:

18 months ago was in A+E with severe cramping. At first thought it was ovarian torsion, they scanned and said I had 3 cysts and wanted to watch them in case it was a torsion etc. One ended up bursting while I was in hospital and I had sepsis, was kept in for 8 days (I think it was 8?)

I was advised to have a TOP at that point as I was 8 weeks and doctors said everything that had gone on would have been dangerous for the pregnancy. I just kind of went with it because I was scared of the outcome if I didn’t. Sidenote - was scanned at 8 weeks before the TOP (surgical) and there was no heartbeat yet, is that normal?

Since then I have been TTC again on and off, works out as 13 months in total but as I say they’re on and off so now that I’m continuously going to be trying I’m just counting as cycle 2.

My periods are very very painful. I have acupressure mats and spend most of my period laying on the cold floor or on the mat, or in bed surrounded by an electric blanket and hot water bottles. I have vomited a couple of times from period pain and often feel like I’m going to pass out when I’m on my period.

I have had visits to a&e multiple times for transexamic acid for the heavy bleeding.

Sex is often painful. It feels like a sharp digging. My partner definitely does not have a spikey penis (lol) so I don’t know why it feels like that? We stick to it during fertile window usually as I’d rather have the pain and try than not try at all, but he often has to stop as he says he can’t continue because he sees my face and feels like he’s raping me as I look like I’m in pain I guess? Once or twice I have also had dark purple/black bleeding after sex.

I have horrible cramps but also bad back pain and pain radiating down legs during my period. I also passed a decidual cast last year, but have read that is nothing to be worried about?

I get ovulation pain and often cramp from ovulation right through to my period and then some, it’s like the cramping just doesn’t go.

To summarise: my periods are hell. I’m sick of being young and unable to have fun, pain free sex. My doctors don’t want to hear about it and just give me tramadol on repeat. I’m worried my fertility will be problematic too but don’t want to get testing as I think my partner will think I’m overreacting and get a bit freaked out, as the TTC thing is kind of an “if it happens, great, if it doesn’t, we can wait” kind of thing for him, he makes up for my extreme lack of patience. How can I get help please? I’m in Edinburgh if anyone has any recommendations?

Side note — those little acupuncture needles, do they work well for endo?

Hi. I have stage 3 Endo and a frozen pelvis, my periods literally feel like labour. So I feel you.
It took me 16 years and countless doctors before I even got a scan, I'm now 32,so change if you're not getting listened to! You have to.
With regards to the fertility testing, I know you don't particularly want to get tested, but at least if you do then you know where you are. Since diagnosis I've found out the only way we'll conceive is with IVF. If I hadn't changed doctors and found one who listens, we'd have delayed treatment and lessened our chances.

I'm sure you know, the pain doesn't necessarily correlate with the stage of illness. So it might not be as extensive as you fear, but it might. Adeno also has very similar symptoms to Endo, so mention that as well when you next go to the doctors. Be prepared to bat off suggestions of the coil, they still tried to get me to have one even though they knew we were trying for a baby

@Pinkstars2501 thank you so much for replying, I didn’t think anyone would as I hadn’t realised how long my post was 😅 sorry can I ask what you mean by frozen pelvis? I’ve never actually heard of that!

And when you get fertility testing can it just be you involved or do they have to involve your partner? As I really don’t want him to think I’m obsessing if that makes sense? Cause he’s quite happy just taking each month as it comes whereas I’m getting quite depressed each time my period comes and would like to speed things up.

Oh yes I get you with the coil thing! Doesn’t help that I’m seen as young to be trying for a baby so everytime I’ve asked so far they’ve done the whole “why would you not want contraception?” thing and make me feel like I’m being silly for wanting to conceive

I have recently been checked for every gynae issue under the sun due to pain, bleeding and general misery. I had a cervical erosion/ectropian which caused pain and bleeding during and after sex. Its come back twice so I've had two colposcopies to remove the cells that aren't where they should be.

Fetility testing can be done just on you. When I had it done while we were struggling to conceive DS it was a blood test (of course I conceived that month just to make me look like a drama queen)

Find another doctor and insist. Point out that you've already been referred for a colposcopy so a Dr must have thought it necessary despite your age. Is there a sexual health clinic near you? I've found with certain issues they can be a lot more helpful than a GP.

I hope you get some help soon.

@LLBandTTC frozen pelvis is basically because my Endo was undiagnosed for so long, and I've also had undiagnosed appendix infections, because I assumed the pain was "just" from Endo (I always knew I had it), the scar tissue and adhesions have stuck pretty much all of my pelvis organs together in some way....frozen in place.

Erm, with regards to just you getting tested I'm not sure. We'd already been trying for two years and because they couldn't say for sure that the Endo was the one reason for us not being successful, my husband had to have his sperm analysed anyway. I think part of that was to figure out if ivf would be appropriate.

I get what you're saying about him being happy to wait and see, but if yours turned out to be as advanced as mine, then that's time you might not have. I just think it's better to have all the information and then you can both think about which way you want to go.

Just keep in mind that the only way the can diagnose Endo is with a laparoscopy, so if you really do think that's what you've got, push for it.

@ToriaPumpkin okay great, that’s helpful to know! I will push for a fertility test then as even if I had endo etc it would ease my mind if that came back okay. Yes a sexual health clinic might work, they always seem to have more time for patients in my experience! My gp just rushes me out as soon as they can ☹️ Haha must’ve been a surprise conceiving that month for you!

@Pinkstars2501 oh god, that sounds crazy. How long were you undiagnosed for? Yes will 100% be pushing for a lap as that is what I’ve been after for ages. I’ve recently switched gp (moved to Scotland from England) so hoping they might listen more here. Can I ask has it left you ttc for ages? I’m scared it takes forever.

I was undiagnosed for 16 years, so literally half my life. Yeh it's left me only able to conceive via IVF. Which we're currently going through.

I honestly believe that if they had listened to me all those years ago and performed a lap, instead of just various different contraceptives, it wouldn't have got this far. Trouble is you spend your teens and even early twenties shit scared you'll get caught accidentally because it's drummed into you that it's the worst thing that could happen to a young person, that by the type you feel comfortable with the idea of having a baby, it's almost too late.

@Pinkstars2501 sorry if too personal questions but can I ask also how old you were when starting ttc? I’m hoping it might not be as bad as I’m under 25 but don’t know if that counts for anything with endo. Have avoided contraception luckily so only ever had implant for about 7 months of my life

@LLBandTTC No it's fine, nothings too personal these days, and if it helps one more person I'll answer anything.

I used the pill (various ones) from age 15-20 then the implant from 24-31. Nothing in between those years and never caught, but wasn't actively trying. Then from early 31 we tracked ovulation and still nothing. Obviously following my lap, we found out why. Had various bloods to check certain hormone levels. Tbh I still don't understand what hormone levels should be. But Was advised as the only way for us.

Of course it might be different for you, I hope so.

@Pinkstars2501 okay thank you so much! I’m going to get my scan tomorrow and hope they will also talk to me so I can ask about fertility testing etc in that case! I wish they wouldn’t drill the whole idea of being on contraception for ages into girls heads, I’ve always thought it was beyond easy to get pregnant for most people but it doesn’t seem that way at all when I look at these boards!

Can you change gp? It seems a big part of this is the dr not referring you onwards.

@fluffycloudland77 I have recently! Just waiting for paperwork to transfer apparently and then they said I can go in and talk about referral. Just really really hoping they’re not like my last gp as they just didn’t care.

LLB, it is awful when you don't know what the issue with but you know full well this is not normal and you shouldn't have to put up with it. I will give you my endo story.

I went to the GP at 15 with painful periods and was put on the pill to control it all. Even on the pill I still experienced a lot of pain, radiating down my legs into my ankles and a sort of numbness of the thighs.

I was basically told I had painful periods and to suck it up (all male doctors) in the end I just stopped complaining about it. After all, all most women have periods, maybe they too are biting down on a towel when they go for a poo when they are on their periods.

At 26 I had a migraine that I couldn't shift, went to the GP and my blood pressure was through the roof, told to stop the pill immediately. All the symptoms that had been masked suddenly resurfaced. Dh had to carry me to the car one day due to the pain and declared enough was enough and this wasn't normal.

Saw a female GP who was lovely, did a smear test and told me to be prepared for this to probably be endo. I hadn't even heard of it. I was referred to a gynae at this point. He listened to all my history (never painful sex but that is to do with endo deposits and where they are) and I was sent for a scan but it only showed cysts on my ovaries. Just border line for operating on. Put me on high does progesterone.

After that was unsuccessful, they put my body into chemical menopause for 6 months, took HRT. I was 27. When I stopped that my endo returned full throttle. My gynae described my endo as "aggressive" and I finally had a laser lap and dye. Confirmed endo, lots of scar tissue and not even sure one ovary could be functioning with the mess inside. Was told IVF was my only hope.

Was pregnant naturally within a month. Total shock for all around, planned but still shocking. I was 28. That baby is almost 17! I had another child 3 years later.

See a different GP, have stuff written down in bullet points to list off to GP, laparoscopy is the only way to get a definite diagnosis but your life is not meant to be this hard. I will confirm that endo period pain was the same as labour, 9cm pain for me.

@treeclimbingcat oh wow, worries me how many people will say this is just normal period pain! I wish they could feel it for just 5 minutes and they might see that it can’t be normal. Male doctors are rubbish for this too aren’t they? I had one last month prescribe me buscopan, said “come back in a month if this doesn’t work” I was like... when I’m on my period I get an awful tummy, I’ve lived off buscopan everytime I go to work etc when my period comes, why would he think someone dealing with this for years hadn’t tried something as simple as buscopan???

It’s like talking to a brick wall. I had a phone appointment last week with a lovely woman at my new gp about it and it got me really hopeful until she said she was the receptionist 🤦🏻‍♀️ First person to listen and understand and she can’t actually refer me.

Do you think they would’ve done anything if you had no cysts? I’m worried as I’ve only ever had cysts on one scan which is why I feel like I’m playing snakes and ladders because as soon as they see clear scan they say I’m fine.

Bet that was a wonderful surprise though! I’m glad you had a happy ending in regards to conceiving!

I wrote a bullet list last night and will take that to the gp with me. At least I know someday I’ll be able to handle labour I guess 😂

A list is a good idea.

I’m going to suggest magnesium liquid supplement off amazon, mega mag in a blue bottle. Tastes beyond foul, but build up from 1 pipette a day for a week, to 4 a day. It’s really easily absorbed and will help the uterus when it cramps. Cramping muscles can be low on magnesium. You increase the magnesium in your body and it stops that pain.

I’ve got pcos and at scans they measure etc & send them to your gp.

I wish you all the luck in the world, your frustration is palpable.

@fluffycloudland77 ooh okay, I’ve never heard of that! Will have to give it a shot, thank you!

Thank you so much, fingers crossed things go well and I finally find someone who will hear me out!

Your uterus contracts all the time anyway, when you have a period it gets faster. If you provide enough mag in your diet it’s a lot easier.

Modern farming practices have depleted the mag levels though so supplementation is needed now. A lot of supplements are a hard to absorb form though and can cause diarrhoea. The liquid is very well absorbed but you need to build up.

Good luck today.

@fluffycloudland77 ah that makes so much sense really doesn’t it, I’ve never thought about that! I’m sure my mum uses magnesium spray for leg cramp or something? Should’ve clicked then that it might be something usable for period cramp! Thank you!

Also, does anyone know — I never get the whole Ewcm thing that people talk about on the conception boards here, could that be because of this or?

LLB, your posts are making me livid on your behalf. How dare doctors minimise this? Treatment of gynae issues in this country are appalling.

Please do also push for that colposcopy. Under-25 is a cut off for screening but you are symptomatic so that should be irrelevant. Government guidance is an urgent referral to a gynaecologist with your symptoms, rather than a colposcopy, but to leave you entirely is utterly unacceptable.

No one has responded to your query about a heartbeat in your previous pregnancy. It sounds like a horrible experience for you, I’m so sorry. The heartbeat usually is audible by 8 weeks so it’s entirely possible that the pregnancy had not survived your illness.

@extracurricularfatigue exactly! I’ve brought the NICE guidelines in before and said look you need to refer me etc but then I get a clear scan and it’s like oh you’re fine. But I’m sure in the guidelines for endo it says even if a scan is clear it should be investigated if symptomatic. They just don’t want to hear it basically, I’m at the point where I’m wondering if I’m better just going private if my new gp don’t listen.

That’s kind of comforting to hear in a way, I’ve carried the guilt of that TOP since it happened but my mum is a midwife and said the same, it just confused me because at the time the Sonographer said their was no heartbeat ‘yet’ so I thought well maybe that is normal?

That was probably a slip of the tongue and I’m sorry it’s been in your mind so long. Your mum is quite right, so listen to her.

Someone with your symptoms should have been referred a long time ago. If your new doctor doesn’t act, you should complain. I have no idea who you would complain to in Scotland though I’m afraid.

So basically had scan and gynae triage appointment today (like emergency clinic for some reason?).

Scan was fine. But they said there was fluid in my ovary and tube or something? Gave me doxycycline and said it was to unblock a tube but didn’t really explain why etc. Also got metronidazole for inflammation and mefenamic acid for pain? She said to go to gp to chase up possible endo and to ask for fertility testing :/ I feel more confused than I was before coming, I don’t really know what any of this is for or what fluid on tubes etc means?

The first two are antibiotics, don’t drink on them. The seconds an anti inflammatory pain killers.

Can you see your new gp yet?.

have to wait until next week to go to gp unless I miss work and do a walk in tomorrow, don’t know if I should?

Do you know if those tablets are anything to do with the fluid in the tubes thing?