I really don't know what to do next, not sure if I can cope with this. Any advice?

Compared to some, I know I am still classed as 'new' to this. I have been have daily pains since December, and was officially diagnosed in March during my lap. Despite now being on the mini pill for a month, I am still suffering daily and it's affecting my whole life, work and marriage. Nothing seems to work, whether it's the surgery, pill, gluten free diet, exercises. I know there are other options out there, but I have NO ONE to talk to and each day seems to get worse as I can't see an end to this. Please can anyone advise me as to what to do next?

17 Replies

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  • Ah Hun bless you my heart goes out to you it really does, so sorry to hear you are having such a tough time.

    Regardless how "new' you are to this condition it doesn't make it any less difficult, the fact that iv suffered for years now does not make my pain any worse than yours, it still impacts on our life in the very same way.

    I am pleased for you that you have got a diagnosis and that in endo terms did not take long to get, it is so important to know what you are dealing with.

    It looks like you are doing everything you can to help the pain, how about making an app with your consultant to discuss other options? Having the pain under some control will really help with all other areas in your life.

    It is also very important to learn to accept this condition, be frank with yourself and others around you and if you are not well don't expect too much of yourself, learn to be kind to yourself.

    I am never without pain but I do have days that are better then others, I am 3 weeks post op and had the mirena inserted to see if that will help at all, everything is worth a try.

    I really hope you feel a wee bit better soon, please post as much as you need too the ladies in this site are amazing and the support is just fantastic.

    Big hugs to you xxx

  • Thank you for your quick reply. I am sitting here in tears as I can't face another day with this pain. I detest relying on painkillers and worry what they do to me on a long term basis.

    My consultant only said he could give me tramadol which I don't want as they make me drowsy. I am booked to see my GP, but that's not until the 7th.

    Some days the pain is an ache, some days it really burns and others it's a sore, prickly pain. It's like a lottery every morning as to what it's going to be for the day. I am keeping a pain diary, and starting to see a similar pattern though. But the mini pill is supposed to stop ovulation, so I don't know how my cycle is still 'normal'?

    My husband is trying his best, but it's like the 'real me' has gone and he is struggling to cope with this depressed version that doesn't seem to talk about anything other than living with this condition.

    Thank you again for your support, it really means a lot xx

  • Hi Mitch,

    Sorry to hear you are finding it hard to cope and that's entirely understandable. I echo everything Lilykat says.

    I was diagnosed with the return of endo (sounds like the sequel to some movie!) at Christmas. I was really very stunned and quite depressed about it. I was about to start looking for work after a bit of a break but realised I was to ill. So my career had effectively been taken away from me and it all felt so unfair. I felt useless and I was in shock. It's quite a bit of turmoil to wade through.

    But gradually I realised it was probably best to pick myself up and try to be positive. I try to focus on what I have rather than what's been taken away and I do my best to do anything that will potentially help me. Since January I am in a much better place mentally. I put this down to taking care of what I eat and also acupuncture.

    The diet will not cure you but if you are to get any benefit from it you need to try it for a good bit longer and look into other things to support your health. I'm assuming you only started in March. If nothing else, eating properly will prepare you for any surgery you might have in future. Keep up the exercise too.

    Also, you say that surgery doesn't work but if you were only diagnosed in March then how can you know this? Have you had surgery in the past? I'm assuming that you've been reading this forum and have perhaps reached the conclusion that surgery doesn't work. But you will seldom hear the success stories on this forum which stands to reason. I had surgery 7 years ago and it was 'successful' for a time but I didn't post this on any forum. Surgery can work especially if you are with a good endo excision specialist. Did you discuss surgery with your doctor? Also, what type of specialist are they?

    The minipill just might not suit you. I don't have much experience of it but maybe it needs time to settle down. Have you discussed the Mirena with your doctor? The progesterone in the coil is a lower dose but targets the location where it's required unlike the minipill which has to wade through your bloodstream and is therefore a bigger dose.

    Have a look on the endometriosis UK support page and see if there's an endo support group near you. If not, perhaps you could get in touch with them to help you set one up.

  • The 7th is far too long to wait you are in pain and need seen ASAP, can you not get an emergency all with your GP??

    I am appalled at your consultant for saying he can only give you tramadol, that's just rediculous there is so much more he can do!! Now don't get me wrong I have also been prescribed tramadol but like you I hate taking strong drugs and it makes me very sleepy so I only take it when I absolutely have too, I am currently on mefenamic acid which I find quite helpful and it's not half as strong as tramadol, the secret is to keep on top of the pain even if its just to keep the edge off it.

    I can't advise on the mini pill as iv never been on it but from what I have been reading I don't think it's been very successful for most ladies, I really think you need to see your GP and discuss other options.

    Have you had the endo treated at the same time as your lap? Do u have any further procedures ahead?

    The most difficult thing I found was the change in me, like you I closed off and could not speak to my husband about anything else other than my pain, that seemed to be my new reality, what u found really useful was getting my husband to read up about this condition, he also comes to ky consultations with me, not fir everyone I know but the way we look at it is its a chronic condition and he has to understand it as much as I do, after all it's affecting his life too.

    I now take each day as it comes and some days are much better than others, I accept that I am a bit different now but I am still me just a bit more high maintenance lol xxx

  • Oh just a quick on I used to pop a good 8 tramadol a day when bad with no effect however after being in hospital they gave me them with paractmol and for some reason they work much better x

  • Hi all.

    Just came across your post Mitch 15. I don't know if I can shed some light on your situation or not but here goes. My daughter has suffered so bad from cramps and debilitating pain in and around her pelvis and back for years. There have been times when she would curl up in a ball in bed and just cry, other times she was bent over the toilet being sick because of the pain. Our G.P wasn't much use at all and these days referral to your local NHS is like pulling teeth! Luckily, my husbands company had BUPA and we were referred to a gastroenterologist. My daughter had a gastroscope and endoscopy nothing was found but the consultant said it was IBS!!

    We both told him he was wrong and left.

    Next we got a referral for a CT scan of her kidneys as the pain seemed to radiate in that area, luckily her kidneys were fine. During all of this she was still in pain. Finally a referral to a lovely gynaecologist who did a laparoscopy and confirmed endometriosis. We still feel there is something else as she is still getting some pain so I feel another referral coming along. The current course of treatment my daughter is on at the moment is quite drastic but at least she has a quality of life that she can live with. She has been put into the menopause and gets all the flushes,mood swings, and weight gain at 23. She has the contraceptive injection every 3-4 months, she has the Mirena coil and takes a small amount of HRT to help combat symptoms. It's a lot for such a young body to take but we are assured her fertility should return to normal once she comes off all of these, but that is a risk she felt worth taking.

    Keep in there Mitch, sites like these are full of information, painkillers only help with the pain and not the cause, so you need to be persistent with your doctor like we were.

    Good luck there is hope.x hope this post helps...

  • Hello, thanks for your replies.

    Surgery hasn't worked for me as I had the adhesions and endo that could be seen removed by laser and excision, but am still in just the same pain.

    I try my best to be positive - I know it doesn't sound that way- and have to be for the job I am in, but with each day's pain it feels like no matter what I do or try, this bloody thing is getting the better of me.

    I just don't feel like me anymore, and get a mixture of anger and depression, some days worse than others. I suppose it's ultimately because there seems to be no end to this.

    I sound really negative, because that's how I feel right now. I was just looking for any suggestions on which way to turn next I suppose. 'Picking myself up' is an option I try and do often, but medically not sure what next.

  • i havent read your previous post i dont know how old you are they didnt do a hystorectamy? i was diagnoised with this beast in december last year when i had a mass removed from my uterus ever since then ive had this constant sharp pain in my upper right side right below my lungs and times its worse than others but it wont go away my obgyn didnt really explain this stuff to me so i didnt bother since at the time it wasnt a bother well now it is i went to hospital due to pain so severe they did cat scan ultrasound all things checked out so they think its the endo. i have to get a colonoscpy just in case but he said its most likely the endo. once i get that i will get rid of my overies and uterus they say hormono therapy can help look up Mayo clinic they have a whole page on treatments for those who are younger than me. im 51 pre menopausal so im ghetting it taking out due to risk and pain.. Good luck oh are you on any Medications too look them up see systems who nows look it all up do your research

  • Sorry Mitch, I hope I didn't appear patronising when I talked about how I tried to be positive and picking myself up. I was just explaining the process I went through and I didn't intend to sounds like I was saying "pull yourself together"! I don't think that's what you understood but thought I'd say so just in case.

    I fully expect to hit the bottom again many times and I think it's important to allow ourselves to give vent to those feelings of frustration and overwhelm. Bottling it up doesn't help in the long run.

    I also discovered that I had to change my perception and expectations a bit if I was to deal with my situation mentally. I had to accept that my life had changed and maybe there are certain things I am no longer able to do or at least can't do for a while until I get sorted out. This helped me relax a bit more about it all.

    Just wondering, is there a possibility that the minipill is adding to your anger and depression? I seem to recall it can have this effect.

    Also wondering about your surgery. Who did the surgery? What type of specialist - endo specialist or general gynae? You say "laser and excision". Laser is known to be not as effective as surgically cutting the endo out so that might be something worth following up. Don't discount surgery just yet as it might be a case of finding the right person to do the surgery.

  • There is nothing worse than someone saying" pull yourself together or pick yourself up". Because your condition is 'unseen' only you know how you feel, if endometriosis and adhesions were on the outside of your body then more people would understand.

    The endometriosis is going to respond to your body's hormonal changes and as such (depending in the spread of it) will react the same way your uterus does each month. Would it be possible for you to speak to your gynaecologist or even get a second opinion regarding your options as they currently stand!

    I can only go on my daughters response by having the Depo injections and Mirena coil. I was really worried she would become addicted to pain killers as she was taking far more than she should and mixing them too.

    If you sort out the endometriosis then maybe painkillers or something else might be just enough for you to cope with the adhesions and have a more manageable life.....

    I really do feel sorry for you Mitch, don't lose hope..

  • Hi Weemee,

    If you are referring to my previous post please read my reply to Mitch. Simply explaining the process I worked through that helped me and I most certainly did not tell Mitch to "pull yourself together or pick yourself up". I responded to Mitch's post explaining this before I saw your response.

    Mitch,

    Apologies if this is how it came across.

  • Hi Brownlow

    No, not referring to you at all.

    It was a general remark that seems to be said to many people suffering from long standing and at times debilitating medical conditions. Doctors and gps are as bad if not worse. Family members also can at times feel like that, I'm ashamed to say I felt that way (at times) with my daughter but this was because I really didn't understand at that time.

  • It's easy for misunderstandings to arise out of emails or posts. I'm surprised it doesn't happen more often here but everyone here is very kind and supportive.

    That's really good of you to admit to! I'm so glad that you understand it all a bit better now for your daughter's sake. It's hard to see our loved ones in pain and I think it's quite natural to wonder if perhaps they might be exaggerating! My husband is very supportive ... but I bet you he thinks he could deal with the pain better! I bet he'd be worse!

    I know my in-laws can't quite grasp what I'm going through because as you say it's all on the inside and I do a pretty good job of looking 'normal'. My father-in-law said "well if it's just pain then you can deal with that!". I was so stunned I couldn't respond but later I actually thought it was hilarious.

    But you are correct. There is a very dismissive attitude to pain in the med profession and a quickness to dole out stronger and stronger painkillers just to make the patient go away. We have to really fight to get treatment on nhs when we are hardly strong enough to haul ourselves to the doctors in some case!

  • Mitch. Came across this from one of the other sites , even if you can't go there is mention of a study might be worth a read. It's on at 7.30pm

    ENDOMETRIOSIS TALK QMC NOTTINGHAM 29TH APRIL

    Wanted to tell you about a talk at the QMC on the 29th April.

    The title of the talk is:

    The impact of endometriosis on women, male partners and the couple unit: findings from the 'Endopart' study. Based on a study carried out by De Montfort University into effect of endometriosis on relationships.

    The talk will be given by Dr Nicky Hudson, Senior Research Fellow, Applied Social Sciences, De Montfort University.

    The venue is: Queens Medical Centre, East Block, Floor C, room C1892 (opposite ward C29).

    I don't think we'll have facilities for drinks so you might want to grab something from Costa in reception on the way up.

    Dr Hudson will aim to talk for around 30-40 mins and leave time for questions and discussion.

    The talk is free and all friends family partners welcome.

    If you need any further information or a copy of the study please don t hesitate to get in touch.

    E mail Endometriosis@kimberley@gmail.com

    Wendy Walker

    Nottingham support group leader.

  • Thank you everyone. I didn't take offence at any comments, just frustrated at myself for getting so low.

    I live on the south coast, so Nottingham is a bit of a trek! But talk looks to be very interesting.

    The mini pill should be stopping my cycle, and I don't understand why I'm not responding in this way. But ironically I have had a slightly better day today pain wise and still spotting so maybe the good days will be more frequent.

    I guess then I will ask about stronger hormones to stop my cycles, then maybe look at the injections to put me into menopause.

    In the meantime I have just bought some devils claw, a natural anti inflammatory. Has anyone tried this?

  • Everything these girls say is great I'm new to site and only told I have endo after 18 years work never understand even now I know what's wrong! How ever I have a little tip get the heat belts for bad lower back pain and wear the heat part on ur belly while at work it can't be seen and sometimes helps me more than any painkillers! ;0)

  • I say exactly the same to my sister every day. I miss the old me but no amount of wishing for her will bring her back. Continuous severe pain completely warps your mind, you can't think of anything else and it inhibits your ability to do the things you enjoy - socialise, work, exercise etc etc. THAT is going to change you in itself. You really must give yourself a break honey, people around you have got to realise what you're going through. You've been diagnosed with a (at times) really difficult disease that gives you such awful pain, sleepless nights, nausea, night sweats, bowel issues and (as if that wasn't enough to affect your mood) plays absolute havoc with your hormones! It's down to them little nuisances that we're all in this boat. You, like me, have been recently diagnosed and it's a lot to take in especially when you consider the length of time you're meant to deal with it for, with treatments being a lot of hit and miss. But this group is brilliant because a lot of people on here have given me hope - have been exactly where me and you are and felt it was all over then they're now back at work, going on holidays, relationships thriving and life is good again. Please take your time. I really do need to take my own advice here as I can be a nightmare to be around at the moment with the way I'm dealing with this but this group is here for you xx

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