Advise needed desperately

Was also wondering if anyone has been suffering with extremely bad blood cots (on their menstral cycle), due to their endometriosis as I've been suffering extremely badly with them. mine got so bad that my GP called me an ambulance at the doctors surgery as she wasn't sure if I was having a miscarriage (turned out not to be a miscarriage thankfully). so My gynea cosultant had put me on transeamic acid as i didnt want to use contraception as i wanted to start a family with my new partner of 2yrs, unfortunately this medication didn't work so Ive given up my plans to have another child sadly to start taking the pill (from about a about a month ago), even this hasn't worked. I'm pretty sure the clots and extreme blood loss i get on my cycle is the result of my iron defficancy anemia. Was really hoping to hear from someone with a similar issue and how to deal with this especially the dizziness and exhaustion.

Would be greatful for any help and advise. Thanx

22 Replies

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  • Hi

    I have had a similar experience, with the blood clots. two occasions which led to a lap to diagnose my endo. I am now on the progesterone only pill and whilst initially I spotted all the time, now that has all settled and the clotting is rare. I have been on it about 5 months now, it took about 3 to settle. I guess you could use the contraception to settle things down then consider trying again? My GPs advice was to give my body a 'rest' with the pill. Hope this helps x

  • Thanks for your advise. I was wondering if you'd tried both the combined pill aswell as the progesterone only pill because I've been on the combined for a month but it puts both oestrogen and progesterone Hormones into the body and as we know endo thrives on oestrogen levels, so, my question is would u suggest the progesterone pill is the better choice and has that type worked better for you than the other type.

    Would be so greatful for any advise:)

  • Hi

    I was on the combined for 9 years, then started to drop what I would call 'bad ass clots'. During this time it was more towards the end that I lost those clots, and when I was tricycled (that seemed to make those clots and my body very unhappy) the progesterone only one has been a total life saver. Good for pain management and I guess not irratng the endo too much.. Only side affect I can think of is my mood is a bit all over the shop... And I have a really spotty face. And of course the 3 months of spotting near daily (luckily I have a very understanding husband!)

    Hope this helps.

    X

  • Thank you for taking the time to give me some advise, I think I'm going to go with using the progesterone only pill instead of the mireana coil, I'm just wondering if you've personally had to make the change over from a combined pill (which is what I've been on for a month now) to the protestorem only pill. Do u know if there'll be any strange side effects or how its done, I.e do I just change it straight over on my next cycle or would I need a months break from being on any type of pill before starting the P.O Pill? Any advise I'd be greatful for and yes it really does make a difference when u have an understanding and caring partner I know I couldn't manage with out mine he's deffinately my rock (although I feel like a burden at times)

    Look forward to hearing bak from u :)

  • Before my diagnosis my GP had the not so wise idea to take me off the combined pill and leave me nothing until I was seen (3months of hell I might add!). So I did have a gap between. I started the progesterone only one mid - cycle the Eason was delay in getting perscription etc.. It was really just the spotting that was annoying, some discomfort also the first week or so. And the emotional stuff, around change in meds and the diagnosis. I would suggest speaking to an endo nurse at your clinic or someone like that. If not that then a GP that gets you. I got the impression that you can just start it whenever (preferably cycle orientated) my endo nurse said to me that a break in the pill was a bad idea as it totally helps with endo pain relief etc, so being on nothing was pretty much the worst thing the GP could have done fore me!

    Happy to help anytime x

  • That's great to know! I will be seeing my gynea next wk so I can discuss all of this with them but its really good to get advise from the perspective or someone who's been through it. Also I was wondering (bit of a strange question, so I appologise b4 Hand) with th P-O Pill because its not putting the female oestrogen into your body and you only getting progestoren its not going to work like testosterone is it? I'm abit worried that's how it's going to work and I'm going to end up growing excess hair in the wrong places. Sorry if I'm asking a silly question it's just nice to put my mind at ease with all facts before going on that type of pill.

    :)

  • It's not a silly question. Can't say it's affected hair grows anywhere on me. Just my mood, far more treat and grumpy more than I was before. But that could also be to do with the stress this endo causes along with life's others delights x

  • That's really good to know because the thought growing lots of extra hairs in wrong places was one of the things that I was most worried about with the P.O.PILL. So uve put my mind to rest abit on that. I'd deffinately like to give this brand ago. So thank u for the info and advise :)

  • No worries your welcome. Here anytime for a fellow endo fighter X

  • Sorry hunny I've just re read over what you've written and i see you were explaining that u were on the combined pill so excuse my last reply about asking you if u were (im so tired at the moment and seem get really confused about what im doing at times im sure its the anemia) although any advise on the change over of pills is very much wanted.

    Thank you and sorry for being abit scatty :)

  • No worries scatty is my new middle name thanks to endo lol x

  • Hi there, I experience the same issue recently but on the first day of my period and I am on the pill. It always starts with dark brown discharge and blood clots but I just assumed it was because of the endo and I'm due to have the mirena fitted during my next lap. As the pill didn't stop the endo for me but it can help with pain during your actual period.

  • HI there,

    I have always had very large blood clots since about 14, I am 44.

    By large I mean up to the size of a tennis ball, but flat.

    I have always had light headedness and have a low/normal blood pressure.

    In the last 7 or so weeks I have been following the diet and supplements recommended by Dr Lara Briden in her book, The Period Repair Manual.

    In that short period of time, my clots have reduced in size, the pain has become less and my fatigue is a little less often.

    It can take up to a year in this new lifestyle to have no symptoms, but the fact that mine have reduced, when in the last year each time they had gotten worse, is brilliant to me.

    To me it seems a huge light at the end of a now not very long tunnel.

  • Thank you all for your wonderful advise I'm willing to try anything new if there's a chance of making my medical health better. X

  • Hi, I have extremely bad clots along with heavy bleeding. I have done for years. I have endo and suspected adenomyosis.

    I really feel for you, it's so horrid. Some days I can hardly get off the toilet nevermind leave the house. I am not exaggerating when I say some days during my period I get clots the size of oranges, I feel them come out and if I'm not near a toilet it's awful. I have very heavy bleeding also. I sometimes wonder where it all comes from, obviously I know! But it seems as if my whole uterus is coming out. I had less stuff come out of me after having babies inc the after birth.

    Apart form it being a right old pain, it just makes me feel gross and I am sure I horrify people when I tell them about it. If I have to leave the house even for a short while I often use a night time sanitary towel with another pair of pants underneath with a child's nappy tucked in them, it's crazy. That can last about 10 mins if I'm really bad.

    It does make me very tired. A few years ago I did have the mirena iud and for about 4 years it worked brilliantly. Now though I am in such a state I am on waiting list for a hysterectomy. I am the same as you, I had really wanted a third child but it's not to be so I am going for a hysterectomy to get a better quality of life.

    I'm sorry I don't have the answer but I really sympathise with you and hope things get much better for you soon. I try and rest as much as possible on my period days and eat tons of spinach! I take iron tablets too.

    Take care xx

  • Thank you for sharing your story with me. It sounds like you've been through so so much.

    There's been times when I've been out and not quite got to a bathroom in time and you just know you've had an accident so the best thing you can do is the waddle walk legs tight together (kinda feels like your walking like a penguin) and just hope nobody's watching and that you can find a bathroom quickly before the situation gets worse. It'sso embarrassing and humiliating that its just not worth going out when I'm on my m-cycle (which is hard when you have a family and responsibilities). I'm just really thankful for my partner he can jump in and get the things done when I can't

    Lots have women have mentiond the mirena coil, but what worries me with that is, I'm so prone to getting lots of infections and I spent 8wks on different antibiotics just tying to clear up a urine infection and pelvic inflammatory disease so it does scare me the thought of putting something so foreign inside, I suppose its worth looking into a bit more.

    My doctor has me on these iron tablets which I'm not sure if there working as I've been on them for about 3 mths now but i also have a vit d defficancy which I'm medicated for too, so that could be the reason why I still feel tired. I think I might try your suggestion of spinach or atleast find some foods that could help maybe its worth seeing adietician. I can't believe there's an actual diet for endo! U get to learn so much on this site.

    I hope to stay in touch, I'm finally off to a pain management clinic in a couple of hrs (yay!) hopefully find some new non medicating ways to deal with my pains.

    Take care :)

  • I totally know your penguin walk! I also take a black cardigan out with me a lot so if I have a really big flood I tie it around my waist to try and hide everything until I make it home.

    My worst day was I was helping out at a school fete doing face painting, there was a massive queue of children, I was halfway though one face and I felt a sudden massive clot and a gush, I had to shout for someone to come and help me and then make it to the other side of the playground and into school, luckily I had bought spare clothes that day, I've learnt to say no to things like that now if I think I will be on my period. I do bleed a little bit everyday anyway.

    Maybe just have a chat with GP or gynae about IUD and see what you both think.

    I do eat loads of spinach, broccoli, beans etc. Just healthy eating in general always helps with energy levels. I am a vegetarian that's allergic to nuts, bananas and shellfish so quite awkward!

    I do hope you get some help at the pain management clinic, just taking the edge off can make a big difference.

    Yes do keep in touch, you can message me anytime, sometimes you just need to have a laugh about it or a good old moan to someone, either can make you feel better!

    Xx

  • That's a good idea to carry a cardigan! I will deffinately be making sure to do that!

    Wow, what an awful situation to find yourself in hunny, especially being at a school fete!

    When things like this happen it makes me feel like i don't want to go out anywhere its bad enough suffering with the pain but the constant worry of having an accident really does get you down. It's so nice to be able to talk about these things with someone who truly understands. I often feel like such a burden to my family, and they're so wonderfully supportive but I feel like I've put them through so much over the yrs from emergancy runs to A&E to having them be there for all my booked in surgeries and medical procedures. So being able to have this site, where u can make some wonderful friends (and as u nicely put it "HAVE A GOOD UNDERSTANDING MOAN WITH") can really mean the world to get it off your chest without feeling like yet another burden. No family member wants to see and hear there loved ones in pain so its lovely to have an outlet like this site. the advise, and support is so appreciated.

    Had my pain management appointment yesterday. Came away feeling a bit disappointed really. Explaining my pains and diagnosis's to the consultant and having her give the "MMMM mmmm MMMM" along with what felt like a very patronising nod (bit like that nodding dog u get sitting on a car dash board) just made me come away feeling abit crap to be honest, she referred me to a pain psychology centre and I'm willing to give anything a go to improve my pain situation but this consultant has made me feel like i should be questioning myself in the way of is all this pain really in my head because she refering me to this centre. She went on to tell me that endo is very liveable with along with some of the other conditions I've been diagnosed in having, and that infact havent gone away (which she seemed to think would), although have got worse over the passed 3yrs! She just seemed so unsympathetic and yet she's a pain management consultant and all she done is passed the buck. Sorry for the moan and rant! Hope you've had a better day than me? :)

  • I'm sorry it didn't go very well at your pain management appointment, it's such a shame they weren't more sympathetic. Maybe the pain psychology will be a good thing, they might realise it's not in your head and give you some actual help.

    I have never been to one so not sure how it works. How do you manage pain now?

    I use co- codamol, tens machine, hot water bottles, wheat bags, heat patches, sometimes the whole lot all at the same time! I recently went to GP and asked for something more, I think I have coped well with pain over the years but I've had enough lately, she gave me Naproxen to try. I haven't tried it yet, I'm waiting for a really bad day to see if it makes a difference. My actual period has always been like being in labour and I have learnt to manage for those few days but lately nearly every day I have ovarian pain, it radiates down my leg and up into my right hand side. I think having one condition does make you more susceptible to others, I also have thyroid problems and more recently food allergies. Sometimes I feel like my immune system is broken. A few weeks ago I got a little cut on my hand and I ended up with an infection in my veins and a massive dose of antibiotics, I might be wrong but I feel like if my immune system wasn't so rubbish that probably wouldn't have happened.

    It is lovely to talk to others in similar situations. Don't feel like you are a burden on your family though, I'm sure you would do anything you could to help them if the roles were reversed.

    Xx

  • Thank u for that sweet comment I know deep down my family doesn't think of me as a burden but I can't stop feeling guilty at times especially when it seems like im constantly moaning about he pain im in. I really would do anything for them. There amazing

    It does make me wonder if there's an issue with the immune system or if there's some sort of connection between the two because I've found since being diagnosed with endo its been hard to fight off infections aswell. It's worth us asking the gynaecologist about it, I'm due to see mine next wk so I will add that question to the list I've already made.

    I have to say I think your incredably brave because I've been using the strong pain killer tramadol aswell as a nerve sensory pain killer gabapentin for over 3yrs now it was originally prescribed for when i had my gall bladder organ removed but due to other problems occuring ive had to continue with the medication. so its amazing to hear how you've coped with the pain methods that you've used, for so long. And yes I can totally understand the times when u end up using all he pain relief methods ( heat patches, ibprofen gels, hot water bottles, pain killers) at once because it just becomes unbearable doesn't it and ur just willing to do anything for a pain free 5mins. , I think when ur in labour u know there's going to be an end to it and at that end there's the most beautiful reward for the pain and hard work u go through in the process of labour so the pain is deffinately worth it but with endo u kinda know there's is no end, or reward, all there is, is the trying to keep it under control from getting wors.

    so I think its ok to say 'I've had enough of trying to manage this pain and im going to take something a little stronger' (naproxen or tramadol) i think your more than entitled to especially when you've tried so many other ways (non medication wise) to try and cope. I've never used that naproxen so I wouldn't know how well its going to work for u but I think you've suffered for so many years now and if it can give u some sort of relief then maybe its worth trying it. As they say life is to short so we should try to enjoy it as much as we can and as pain free (if possible) :)

    Take care hope to hear from u soon x

  • Oh my goodness, I had to laugh about your description of the overnight pad and the child nappy, because I SO do that myself. It's awful, isn't it? It's even worse when that happens at work, I always run to the toilet as soon as I feel it coming. Before the large bloodclots come out I usually get cramps (like mild contractions), so I generally know when they are coming. So looking forward to my hysterectomy...

    And yes on the spinach, I have a spinach salad for lunch every day and that does seem to help a bit, but during my period I am super wiped out. I find drinking a lot of water does help a bit and that's fairly easy to do, so I keep an eye on that.

  • Well it's nice to find someone else that has resorted to childs nappies too! It's a bit undignified but better than a big old mess. Yes it is awful. If it's really bad I try not to leave the house but sometimes you just have to.

    I don't work anymore as my Son has special needs and I'm his carer. I think I would have been sacked from a job for spending so much time in the toilet! There no rest from your own children though, no matter how much pain I'm in or how much I'm bleeding I still have to wash and dress my 12 year old and help him all day. You just have to laugh sometimes and get on with it.

    I'm looking forward to my hysterectomy too which is something I didn't think I would ever say but now I know there is no chance of more children it's seems pointless keeping it all.

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