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Does this sound like endometriosis?

(12 Posts)
SloanePeterson Sat 20-May-17 18:19:44

This may be long so I apologised in advance.

The last six months or so have been horrendous health wise. Last September I had a miscarriage at 10 weeks, completely out of nowhere and it was a very bad one. I needed an emergency ERPC and had a large blood transfusion as I just wouldn't stop bleeding sad They gave me the depo injection before being discharged a few days later. I spent the next three months bleeding pretty much constantly. The last two mo this I've had what amounts to a 'regular' period, though it maybe lasted about two weeks at a time, with prolonged spotting at the beginning and end. I'm now over a week late from my next expected period, but I've had horrific pelvic pain all month, to the extent that I've worn a sanitary towel every day for the last 5 weeks, I've been so sure I was about to get my period. The pain has been breathtaking tbh, quite like constant, early labour pains. The last theee or so weeks I've had terrible back and hip pain too.

I saw a really good nurse practitioner in January when I was fed up of the constant bleeding and I had an ultrasound which couldn't see anything amiss. I also had my smear test as scheduled in March and nothing sinister was found. But I know something's not right and tbh Infeel feel been trying to grin and bear something that I really shouldn't have to. I'm hoping to see my GP next week but what can I expect them to do? I also had a miscarriage in February last year, at 6 weeks but it was very straightforward. I'm only 32 and have had 3 dc without any problems but the last year has seen me go from feeling perfectly normal to feeling a bit of a shell really. It took a lot of very deliberate hard work to get my energy levels back up in the new year but now I feel so tired and being in pain all the time is just getting me down.
No reason was found for the second miscarriage, but I've read that endometriosis can be a contributing factor? It would also explain the pain. I'm just fed up of seeing no end in sight for this.

Should also add, I'm very definitely not pregnant.

EllenRipley Sat 20-May-17 18:58:44

It's very possible you have endo but they can't diagnose it without a laparoscopy. If you've had a recent scan and there's no sign of fibroids or cysts but you're still getting heavy/prolonged/erratic bleeding I would ask GP for another referral for further investigation - they may want to do an endometrial biopsy or check for infection. You're too young for menopause but a hormonal imbalance could also be a possibility. In my experience they would rule out everything else before diagnosing endo. Sorry you're going through this, you must be worn out! Hope you are taking some iron. X

AttilaTheMeerkat Sat 20-May-17 20:00:25

I am sorry to read what has happened to you over the past few monthsflowers

I would ask the GP to refer you to a gynaecologist for further evaluation. You need a diagnosis first and foremost and endometriosis or some sort of pelvic infection post the ERPC cannot be entirely ruled out here. It is, as the previous poster said, usually diagnosed through a laparoscopy (keyhole surgery type op). An internal ultrasound scan would not detect it if it was there.

AttilaTheMeerkat Sat 20-May-17 20:01:20

In the meantime I would suggest you keep a daily pain and symptom diary if you do not already do this. This will help the gynae further.

You will need to be persistent in order to get answers.

SloanePeterson Sat 20-May-17 20:02:57

Thank you Ellen. I was taking iron but tbh I stopped as it was really messing with my tummy blush I've always had a tendency to be anaemic anyway but god I felt like I'd been hit by a bus for months last year. I've tried to up it in my diet but I suppose I have let that slip so I'll get back to making more effort. The menopause had occurred to me tbh, I've read up on peri menopause and was actually quite taken aback at all the things that matched up to what I've been feeling. My mum is a total prude so I can't even ask her about how she experienced menopause, though she had her last baby quite late at 37. I've long suspected my sister has pcos, though she wont approach a doctor about it, so I do think there might be some family history with wonky hormones. I've been quite panicky at the thought that I'd have to go back into hospital and have investigations done, as the last time I was there I felt myself accepting that I was about to die and I've not even begun to deal with that really, but I got through the internal scan and my smear test after explaining to the nurses how scared I was and rationally I know I'll be fine, but it's just been such a long slog.

SloanePeterson Sat 20-May-17 20:06:10

Thank you too Attila. My op was in September though, surely an infection would be obvious before now wouldn't it? It was all done in an enormous rush and there was so much going on that I've never given the op itself much thought.

mum2benicole Sat 20-May-17 20:10:57

Hi I'm 25 I was diagnosed with endomitriosis at 16 they took two years to find out it was that I had scan after scan nothing showed and then they done key hole surgery and for a lot of endo. My symptoms were heavy bleeding I would go weeks without then months on and then a few days break to having bleeding and a lot of clotting. I also had 3 miscarriages. It's worth getting a proper diagnosis so that you can get the right treatment as endo is a progressive disease. Xx

EllenRipley Sun 21-May-17 01:14:08

God, I can imagine how knackered you must feel, physically and emotionally - if medical procedures cause anxiety then the last thing you want is more of the same. I know how stressful it can be, I had a load of investigations last year, followed by laparoscopic surgery (suspected endo, but turned out to be adhesions from c section) but by that point I'd had so many transvaginal ultrasounds it barely registered! But you dont want to end up with health anxiety on top of it - you need some answers, and treatment if needs be. It's very possible your hormones are working against you and that could require more subtle treatment, but you def want to rule out all the other stuff so you know what you're dealing with. Existing endo can be removed (to a degree) by surgery and you can manage the condition thereafter, same with fibroids. I did a lot of research over the years into diet, supplements, exercise etc as my hormones have been out of whack for a while (I'm in peri now), and it really helped. You need some answers first though. I'm probably repeating myself now, up too late! But just wanted to say hang in there, I think there's loads of women in the same boat and it can be wearying. Btw, I take iron bisglycinate, very well absorbed but much gentler on the stomach, might be worth a try. Keep us posted x

SloanePeterson Wed 24-May-17 21:39:58

Well I had my appointment today and I'm a bit annoyed. I saw a different nurse practitioner and had to explain everything that had happened, which was fine but when she saw my last blood results she asked if I'd been given iron replacement as apparently my results showed it was very clearly needed. I'm so cross, I had a terrible time in the new year thinking my exhaustion was all in my head as the blood tests were showing nothing was wrong. She's going to refer me to gynaecology but first I need to go back in a couple of weeks when I'm not bleeding so she can swab for any other causes (always pleasant to be asked if I've got chlamydia first thing in the morning...) and I'm back tomorrow to have another full blood count done. I've been reading tonight about a blood test that may indicate gynae issues, a CA125, is it worth asking them to do that too? I'm becoming more concerned as today I realised just how much I've been peeing blush I noticed more as I was out all day, but I was desperate for a wee every hour at least. Haven't been drinking anymore than usual. The nurse also asked about my bowels and I realised that for at least this last month I've been going form zero to absolutely desperate in no time at all, which is very new to me too. I'm trying not to get worried as I know the balls now rolling to get this sorted but I'm feeling very tired, unwell and emotional tonight

EllenRipley Wed 24-May-17 23:17:39

I'm sorry to hear you're feeling so crap flowers that's very frustrating for you. But first things first, treat your iron deficiency. You should feel loads better. Low iron can actually cause more bleeding. Ask when you get your bloods done if they plan on doing CA125. It may be something the gynae consultant decides to do later on. Often they don't because it can be misleading; a raised level can indicate a whole host of gynae conditions incl fibroids, cysts etc so while it may be helpful to indicate something is going on the results can send you into a flurry of panic as it's also often used as a marker for ovarian cancer BUT please dont go there (like I did!) as more often than not, a raised level is a much more benign indicator. Your waterworks and your bowel symptoms may or may not be connected - could be hormones, could be stress, could be because your iron is low. Take a urine sample with you when you're getting bloods done, you could just have a UTI. It's good that they want to rule out infection first. I hope it's not a long wait for the consultant but you can arm yourself before you go and ensure they look at every possibility that's concerning you; ask about cysts, fibroids, endo, whether they plan a hysteroscopy/biopsy. It's bloody rubbish (literally - scuse inadvertent pun) when our bodies put us thru this and you will be worn out simply from your iron levels and any hormonal flux that's going on, as well as the stress of it all. Make sure you get checked for a UTI just in case. Try eat well and sleep well and get some iron in you asap. I totally sympathise as I've had a load of gynae issues & investigations since i had my son and it wears you out, but it does sound like you've taken control and you're on the right track, so be kind to yourself xx

SloanePeterson Mon 12-Jun-17 21:33:02

Just coming back to this to update as I'm feeling sorry for myself. I'm now back on quite a high dose of iron as my bloods indicated 'mild' anaemia. I also has swabs done last week, basically to check for STIs or any other nasties and those came back clear but the nurse wants to see me again next week (she's on holiday this week and it was the receptionist who called to tell me this). Now I'm worried that she saw something amiss? I don't understand why she hasn't just referred me to gynae yet. I've spent the last 24 hours with crippling back and hip pain again and it's all getting a bit much. I literally can't stand up straight and I can't sleep as I just can't get comfy. I can't go on like this every month. When she was taking swabs last week, a gold fortnight after my period should have really stopped, she commented that I was still bleeding a little, and I'm still spotting every day. Between that and the crippling pain I'm really frightening myself that something is seriously wrong 😞

SloanePeterson Mon 12-Jun-17 21:33:57

Sorry, I did mean to add, is it worth me
trying to get an appointment with another nurse tomorrow? If only so they can help with the pain.

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