Needing some support

Hello, as the title says I just need a bit of support and reminder I'm not going through this alone.

This period has been horrific pain wise. I get terrible trapped wind/constipation sometimes which causes everything from my stomach down to just spasm and cramp in agony. I could barely walk yesterday and nearly threw up in pain. I got really scared and shouted for my other half to help me as I felt so faint then everything went black as I stood up but didn't faint fortunately. It passed after about an hour. I've had it before but it's gotten worse. I think it might be the Clomid causing the endo to get very enraged.

I don't know how much I can take. I'm exhausted and so so bloated I can't do any trousers up and all my stomach muscles feel tight and sore. I feel i could pop and that I'm full of air but not constipated.

Psychologically I'm struggling so much. I'm waiting for an mri next to determine how deformed my reproductive organs are and if they can access my eggs for ivf. It's killing me as a very close friend has just found out she's pregnant unexpectantly and although I'm so happy for Her I can't help but feel incredibly bitter and jealous. I can't stop crying. I cry going to work, re touch up my make up, cry at lunch then do the same and continues throughout most of the evening.i know things with my mood are quite worrying (I work in mental health) but I feel very hopeless and lost at the moment.

Sorry I'm aware this sounds like a self-indulgent post. Along with Infertility issues and this pain as well as general life stressors I'm running out of resilience

X

12 Replies

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  • Oh no wonder you feel the way you do! Its so awful to be in chronic pain all the time and to be having the side effects that you are having. Its such an emotion situation and to hear about your friend too, no matter how happy you are for her, will naturally bring up all of those feelings. Its not self indulgent either its essential to vent, to get it out and know you are not alone. I had stage IV endometriosis for 27 years (& laterly adenomyosis) - I had part of one ovary left and both fallopian tubes were damaged and I, by the grace of God, managed to have 2 children. I had to change quite a bit of my lifestyle etc, and I share this to give you hope, but I managed to heal myself naturally after countless drugs, painkillers and surgeries failed me. I hope in the next few months to have more information to share with others. Don't give up hope. Hang in there. Best wishes xx

  • Thank you for that reply. I have stage 4 endo and after a lap last year things were easier but have gone rapidly down hill.

    Fantastic news about your children and I hope there's a light (and baby!) at the end of this fertility tunnel: obviously primarily for the joy of bringing a new life Into this world but also so I can go back on the pill and not have this pain as I went without blissfully for so many years.

    I'll be interested to hear some of the positive changes as I may be able to try some.im not keen on painkillers especially as the pain can come on very suddenly but I have a TENS machine I try but often I just grunt and gruffle my way through it!

  • Hi hun. I'm do understand what your going thro. I have stage 4 deeply infiltrating rectroviginal endo and adenmyosis. Having mri scan tomorrow morning and awaiting major surgery. The pain is horrific and Daily as well as all the other awful symptoms I have no advice as the others have already given you best advice just wanted to send you hugs and if you ever need a chat I'm here for you. Best wishes xx

  • Thank you for such a nice reply. Sorry to hear you are struggling too and I hope things go as well as they can x x

  • Hi there, sorry for late reply only just seen your message. I had even more issues after my 6th laparoscopy. The development of adhesions that wrapped themselves around my bowel, bladder and my ovaries. I could barely stand up straight let alone walk. I was emailing the consultant going "whats going on! I was expecting to be all cleared out of 8 cysts and endometrial deposits with this abdominal excision and then jump back up and head back to my business". But it was not to be. I was given the usual chat of "oh you are an unusual case etc and have a hysterectomy but I knew that it had never helped my mother. I have actually just put a video of the last laparoscopy on to youtube. I asked the gynaecologist to video the whole procedure so I could a) check what he was doing! and b) so I could perhaps get a better understanding of what was causing the pain. It was quite an eye opener and it helped me have more compassion for myself and the pain. I even got my husband and children to sit down and watch it too. I needed them to understand and support me. (Not a video to watch as you are about to have dinner but fascinating to see - let me know if you want me to send you a link). I used to use the TENS machine but it did nothing for my pain then.

    So I had no choice. I kept thinking "there has to be another way/what did they do in the olden days before the surgeons got excited with scalpels?" So I sent a year doing an online nutritional course (I was bed bound through out this time) and made it my business to understand as much as I could what the 'causes' where and inflammatory factors. The changes I made to start with was natural progesterone cream (- not the chemical alternatives farmed out at great profit by the pharmaceutical giants). Then I used natural aromatase inhibitors called Myomin and DIM; lots of clinical trials done on them and you can purchase from Amazon). Diet was a biggie with the cutting out of wheat, gluten, dairy and (sadly!) sugar and alcohol, whilst learning about the phytoestrogens and zenoestrogens etc.

    What ever you do just do not give up hope. There is another way other than the Endometriosis Triangle! I am in the process of putting together a website so I can share all I know with you lovely women. It has been heart wrenching to read and be reminded of the pain, side effects and heavy dead end despair I used to feel - especially when doctors not only couldn't/wouldn't help me but put their hands up in the air and then insinuated it was all in my head.

    Hang in there and read up on natural progesterone cream to start as that will help balance out the oestrogen dominance which is causing the pain. If you need any help on which types (obviously you are looking for ones without SLS, parabens, perfume etc) then let me know.

    Wendy xx

  • I'm sorry to hear how difficult things are for you at the moment and can completely empathise with the period pain. I usually run my pill together however my consultant said to have a pill free week every so often. Well my last one was awful and I had similar symptoms to you - feeling sick, trapped wind, being bloated and the last straw was not being able to walk without back pain and hip pain which made me feel emotional. I can usually put up with pain but it really got to me.

    Im not really sure what clomid is but

    I'm guessing it affects your hormones and therefore i would try not to be too harsh on yourself for being upset and emotional. I was on zoladex for 6 months and was an emotional wreck - I couldn't stay on it as it was impacting on my ability to work.

    It sounds like you have a number of very stressful things going on at once and that maybe your friend being pregnant has been the final straw. Any one of these things is stressful in itself. You are doing brilliantly to still be going to work considering how you are feeling. In terms of bloatedness have you tried changing your diet? Or taking vitamins/ supplements? Are you able to take some time off work?

  • Luckily I'm off this week on annual leave so it's not impacted work. I do make sure I take some annual leave each month though when I'm due on or try to make sure I'm office based rather than travelling around so if I need some respite or need to go home it's not impacting as much.

    For the rest of the month I have no problems with bowels or bloating and I eat plenty of fruit/veg/fibre which I try to increase along with water. It's not even feeling like I'm constipated today just literally full of air! I've tried some yoga but it hurt too much!

    Clomid is making me ovulate but aggreavtes the endo like crazy it seems. Was a shot at me convincing naturally but eggs/tubes are in v odd positions they reckon so not really helped unfortunately.

    You are all lovely x

  • As you work in mental health, can you access any support services for counselling about infertility issues. Obviously drugs are causing side effects but there are real emotional issues lying underneath. Perhaps see GP or get back in touch with gynae?

  • I have a gp appointment this week anyway so I will speak to him about how I'm feeling as I am finding things quite tough. Have gyne in a few weeks after an mri scan for results so will see what comes of that.

    I've tried to access counselling through work, unfortunately I didn't 'meet the criteria' as its not 'directly work related'. Frustrated isn't the word.

    Have found a local support group who meet monthly so I think I'll go to that. Talking to others, such as you lovely lot, helps to make me feel a bit less alone with this all.

  • Aww thats a shame but there are services out there. Bit of internet searching perhaps before GP appt? Might be a telephone helpline? Sorry I don't have any uptodate info. Many years ago I had private counselling - was a charity and the cost was means tested so was affordable. Hope you can find something as talking with a professional can be fruitful as infertility is a long and winding road. loveX.

  • 😔 I'm so sorry to hear you're in so much pain! I can TOTALLY relate. I have pcos and endometriosis and recently it's been so bad that I haven't even been able to wear my jeans at all! I've ended up wearing leggings and tights as I literally just feel like a balloon fit to burst!

    I'm having a absolutely horrific time period wise too! Spent all yesterday writhing in pain along with being bloated and pelvic pain too 😔

    Not only does it wreak havoc on your body but it's so mentally draining. I cry most days too just because I feel sometimes that I just can't keep living like this with no relief. I know it's so hard for people to understand and relate too-most of my family and friends just have no idea how debilitating it really is.

    I've got complications with my bladder at the moment too which my urologist thinks could mean endo has spread there- so I've got scans coming up and also a cystocopy and then I've also been referred back to my gynaecologist as all of my symptoms have been so bad- pelvic pain is all day everyday so I'm going to have another laparoscopy too which will be my third.

    Don't ever worry about feeling like you're self-indulgent. You have to deal with a lot and it dominates every aspect of your life so your completely justified in feeling like that.

    As for the children aspect of it-its absolutely horrible. Completely that this disease can rob us of having a family- and I know how hard it is not to feel bitter watching other people get the things you're not sure you're able to have. I wish I could make it so every single woman who suffers with this had the chance to have a baby. It's so unfair.

    I hope you start to feel a little bit better than you are at the moment. Maybe try wearing some leggings instead of trousers if you can?

    Sending lots of love and hoping you feel better. Just know you're not on your own.

    If you need to talk or speak to someone then feel free to send me a message-I'm also on Facebook as Jordan-Melissa Corrigan or instagram as avelvetcrowbar

    Xxx

  • Oh honey, massive hug! :) You are certainly not alone. 5 babies and counting with mates this year, argh!!!!!

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