In need of support

Im 21 years old and was diagnosed with endo about twelve months ago after under going multiple scans, blood tests, cameras and laperoscapys along with multiple pain medications and visits to a pain specialist. I am struggling to deal with both the physical pain and the emotional strain of living with endo. I've now undergone four laperoscapys in the last two years or so, what I struggle with most is the feeling of relief I have for roughly two weeks or so post op and then having the pain start over again and quickly become far more intense than it was prior to the surgery. Does anyone else experience this? I am scared that the endo is going to ruin my relationship with my boyfriend of five years as intercourse is almost unbearable due to the pain, despite his reassurance that our relationship is based on more than that I appreciate that he has needs that I cannot necessarily fulfill any more. He doesn't seem to understand this concept as I think he is under the impression that my endo may go as quickly as it came (this all began when I woke up one day in a lot of pain and was throwing up etc) and despite my efforts to try and explain that this is likely to be long term I still feel as though he doesn't understand that. I have recently struggled my way through a law degree and have never been prouder of myself than the day my results arrived telling me I had achieved a 2.1 as I had spent around nine months over the period of the course in and out of hospital or too ill to attend. Despite achieving what I feel is a miracle I fear that if I struggled with my degree then becoming a solicitor is an impossibility as I cannot begin to fathom how I will manage to work the hours required when I am constantly exhausted.

I had convinced myself that I was fine, the endo wouldn't beat me and that I didn't need support. However, I have finally come to except that in truth I am not fine and I am struggling to accept that I will be in excruciating pain and constantly exhausted permenantly. I am hoping that if I reach out to others who understand how it feels then maybe I will once again find the strength I feel I have lost recently.

Sorry for the long and rather depressing blog but I would really appreciate any advice anyone could offer me. Thank you for taking the time out of your day to read this :)

Emily.

20 Replies

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  • Hi Emily... Well done on your degree!!!! Altho I'm a lot older 45 hehe.. I think most of us ladies go thro surgery only to find out relief was short lived.

    Through my hours of reading about endo I think the key I'm managing pain seems to several things....

    1... endo specialist is a must make sure you are under the best consultant in your area..

    2... Excision of endo rather than lazer seems to give much longer relief ..so perhaps you could do some reading up on this?

    3... Try the endo diet as most of the foods we eat contain hormones that makes endo pain worse....

    4.... If possible try acupunture but use a Chinese practitioner as they have far better results than nhs ones!!!!

    I hope this helps a little... Hang in there I know it's extremely tough...

    Good luck xxx

  • Hi Jewles, thank you so much for replying to my post and although wouldnt wish this illness on any one i must admit it is nice to know im not alone! fortunately for me I am seeing a really good gyn who knows a lot about endo, I realise i am extremely fortunate to have found a brilliant doctor first off after reading some of the awful stories on here! I will have to discuss the two different methods with him as well as do a little more research as I'm not even certain what method he will have used (I don't tend to ask too many questions I was working n the basis that it would be easier the less I knew but I think it's time that changes)

    Im already having acupuncture and do find that it relieves some of the pain but nfortunatly it is never long lasting :( I have also heard that Chinese herbal medicine can help, have you any thoughts on this?

    In relation to the endo diet I wasn't even aware that one existed, I really do need to start my research!! I will definitely have a look into that and give it a go.

    Thank you once again and I hope you are feeling well :) xxxx

  • Hi Emily,

    I am sorry to hear you are feeling the way you do. I felt I should reply to this post as you reminded me of me. I think we are kind of in the same situation in regards to our relationships. I'm slighty older than you at 24 but I have been with my fiancee for 8.5 years and I know exactly what you mean. I found that taking my partner to my support group meetings really helped him understand the condition. For example we have a speaker that came to the group to talk about painful sex I think the fact that the speaker was male and that there were 12 other women in the room all saying the same thing made him realise that what I was saying happened to other people too! He was talking about it for weeks afterward. We were having a discussion last night about the amount of husbands/partners that have affairs because their partners have endometriosis was awful and that this is not an excuse to go and have an affair. It sounds like you have a good relationship anyway from the length of time you've been together but my advice would be make him read information online like we've all done after our diagnosis. Learn more about the condition together and you may feel less alone?

    As for your degree you should be really proud of yourself, a lot of people would have given up but it just shows you have the personality to succeed. I often worry about the time I have off of work but colleagues know I do everything I can to fight this illness so I think the understand when I'm sick, I'm sick. I often worry about having children. If I can have them and if I did have them, would I have the energy to have them but people do.

    I hope this helps, I'm feeling quite in need of support to at the moment but just don't really know what to write. I try to focus on the positives when I am down although it's hard try to do that too.

    Trinket x

  • Hi Trinket,

    Thank you for replying to my post, it is so nice to hear from someone who completely understands how it feels to live with endo.

    I will have to try and persuade my boyfriend to attend a support group, (once I've worked up the courage to go to one myself that is!) but I am uncertain as to how he will react as he isn't a very open person in that respect. I wonder if there's a support group available to all our men to help them deal with what is wrong with us?

    I'm hoping that our relationship will last and I know he says all the right things to make me sure it will but I can't help but feel a little guilty as I feel that my illness is also holding him back in some respects.

    I definitely understand the children dilemma! I've known since I was 14 that there was a chance I wouldn't be able to cave children and knowing I've got endo will probably be more destructive to the chance I may of had! I think I've accepted that What will be will be in that respect. And then like you say once you've worried enough about whether or not you can have children comes the really difficult question! I cannot see how I'd cope with children at the moment as I constantly feel exhausted and drained, this scares me more than anything as I've always wanted to be a mother. However, I some times wonder if it is fair for me to have children if I struggle to do my simple daily routine and I wouldn't want to have to sacrifice my time with them because I was too ill. Once again a point my boyfriend doesn't understand, he thinks it's black and white either we can have them or we cant. He won't accept that there is also a 'is this the fit thing to do' area too!

    If you are also in need of support I am happy to talk to you or just listen to what ever is on your mind if you think that may help you!

    Thank you nice again for your rely, I really do appreciate it!

    Emily xx

  • Hi Emily,

    Thanks for your reply. I have to say it's quite amusing going to the support groups with him as sometimes he is the only male there! They all love him though as they all think he's brilliant for attending with me, I'm surprised his head fits out the door by the end! I honestly think he is more clued up on the female anatomy than some women are! I am doing my best to raise the awareness of the condition both to males and females!

    I understand the guilty feeling as I have it too and like you say they say all the right things but I would love to know what they are really thinking. It's hard on us but you do have to remember it's hard on them too, sacrificing things and running round looking after you when you are ill.

    As for the children thing I will just have to see the results of the day test in 2 weeks time. Quite worried about what they are going to find but will have to deal with it.

    Add me on FB Samantha Smith or e-mail samantha_smith88@hotmail.co.uk if you want a rant (I'll listen and go on for hours if you need it!!).

    xx

  • Ive just added you on face book Hun :) so I'll speak to you on there if you want to message me once you accept?

    Thanks again xxxx

  • I haven't received a request :-( maybe search me by my e-mail address as my name is rather popular!! Look forward to speaking to you x

  • You have already achieved so much during such horrendous times. This proves you have the strength and power, just deal with one day at a time. I take huge amounts of pain relieving drugs and feel exhausted all the time, i still somehow work full time and im soon to take on foster care. Despite illness and pain you can and will achieve.

  • Thank you so much for your reply!! The thought of working full time and fostering is exhausting n itself, you must be super woman!! I hope that you are feeling well and that you enjoy your time as a foster carer :).

    Emily xxx

  • Hi Emily,

    Just echoing what the other 3 girls have said above.

    Firstly congrats on the degree, wow what an achievement!

    Secondly the boyfriend situation can be tough, my boyfriend left me and said that sex was "too important to him to not have it whenever, wherever he wanted it and to worry about if it's enjoyable to me" but as you can probably tell by his words he was a bit of an arsehole! Your boyfriend seems the opposite and like one the others said take him to a support group or show these blogs. There are tons of books that help too.

    Speaking of which, I don't know which part of the country you're in but support groups are popping up everywhere, we have one in Birmingham. I find the support you get from other women is invaluable. I consider one of the girls I met on here a best friend as shes always there for me and knows exactly what I'm going through, but I've actually never met her!

    If you ever need to chat (this ges to everybody else too) I'm on Facebook - Hayley pepall

    Or you can email me hayleypepall@yahoo.com

    Good luck chick, you'll get through this, I promise

    Love Hayley x

  • Hi Hayley,

    Thank you so much for your reply!

    I'm so sorry to hear your partner was such an arse to you! I just can't begin to understand how a man can think that's acceptable behaviour! You must be far better off without him!

    I actually live in Birmingham, where aborts does your support group meet? And thank you for the email address and face book I will add you on there now :)

    Once again thank you so much for your reply!

    Emily xxx

  • Ah brill, I'm glad you're in Birmingham.

    The first one was at South Staffordshire college because they joined up with another group, I'm not sure when/where the next one is but I'll add you to the group on Facebook.

    Speak to you soon xx

  • Hi Emily

    Congratulations on your degree.

    I've been reading your post and the replies and you've done the right thing reaching out for support.

    I've suffered with endo now for approximately 3 years and after having one consultant for 2 1/2 years I was discharged as they wouldn't treat due to me been overweight. I'm now under the care of Leeds Center for Reproductive Medicine and after just one appointment I have got further than the previous consultant got me in all the time.

    Hormone injections and HRT definitely don't help you loose weight!!

    I have tried numerous things to control the pain like all of us and it isn't easy. As a last resort I decided to try an endo diet. At first I was a bit dubious of it as it seemed I had to cut such a lot of things out but I've adapted it to suit me.

    The main change been I no longer eat red meat (it encourages negative prostaglandins which cause inflammation) and I eat pineapple every day as it contains Bromelain which helps to reduce inflammation.

    I also try to avoid as much diary product as possible but love a nice cup of tea and a yogurt so possibly aren't as good on this one as I could be.

    I would really recommend you at least have a read of:

    amazon.co.uk/Recipes-Endome...

    You can have a read to see if it would be any use before you buy.

    I know it's not the answer to everything but every little step counts towards learning to cope with this condition.

    Lots of Love

    xxx

  • Thank you so much for the link I will definitely have a look at that :) i have already tried reducing my dairy intake and cutting out as much meat as possible I find that mince makes me swell really bad and easily doubles my pain. Fingers crossed the diet might help :)

    I hope your well and not suffering too much!!

    Emily xxxx

  • Check out

    Endo-UK website for dates of next Birmingham Support Group meeting--you will find amazing support here.

    Also a book that I would recommend is Take Control of Your Endo by Henrietta Norton--it's a fairly new book with lots of info and also help with what to eat.

    Did you know Hilary Mantell (Booker prize winning author) was training to be a lawyer when endo prevented her going any further and she decided the only way to live with endo was to adapt her life--that's when she started writing books! So don't feel defeated by it--there's always a light at the end of the tunnel, just sometimes it's hard to see it! Hope you don't feel on your own so much now. xx

  • Hi Hilary,

    Thank you for your reply!! That is another book I will definitely add to the list and if I'm honest I had never heard of Hilary Mantell before you mentioned her so I will have a little read up on her, it's interesting to know she wanted to progress down the legal route too. Fingers crossed I'll be able to cope with it all!!

    Having all the support from all you wonderful ladies has definitely helped me to feel a bit more positive and less alone, it's quite empowering to know there are so many of us suffering but despite it all even just a friendly message can improve one of our bad days!

    Thank yo again,

    Emily xxx

  • hi Emily

    i just wanted to voice everybody else's comments and hopefully show you there is some light at the end of the tunnel

    Congratulations on the degree to achieve what you have through a diffcult time in your life your career life will only improve !

    like you 16 years ago when endo wasnt as widly known as now or more known as a working women' diease or the fact you hadnt had children yet it was ascary and long process ! mine was discovered after coming of the pill a broken marriage, stress and weight loss... after blood tests ultrasounds and different docs i was diagnosed with sevre endo

    since then and over the years i have had 16 ops numerous of pills, minera coil zoladex treatment and just to throw into the mix CIN3 withn 5 months of 2 ops... and i found it hard to deal with whether i was single or in a relationship... some people understand, some people are ignorant and some people cant cope.... life is unfair but i spent my mid 20's to mid 30's in and out of hospital having treatments being told one thing or another... zoladex even though it shuts your body down was for me the only success as i suffered cysts constantly with also the endo and IBS as alot of problems come hand in hand with endo...

    having people to talk to through channels like this and friends helps in fact its great to rage and find out from others their treatments...10 years ago it was so common or talked about - today you have the diets you have the specialised groups and teams - use these to your advantage !

    endo never goes completely it becomes managed and its how we manage it that makes us survive..

    3 years ago at the age of 37 i was told that there wasnt many choices left for me and even though i was bleeding every 18 apparently i was hitting the menopause childless... after a referral to an IVF clinic i was told i was a high risk due to my ops tests and age....

    well i feel pregnant still waiting for IVF the pregnancy wasnt easy and you never stop worrying but for 9 months i was endo free... and now at 40 i have a 20month old daughter

    the endo is returning but now i deal with it differently - i have just had an end biopsy awaiting a scan and need to have another smear just to make sure its not the C word... but i wouldnt let the ENDO win and you wont either - stay fighting stay talking to people and eventually we will have more answers more treatments and more support...

    good luck and stay positive i never saw my future as it is now and so glad i never opted for the hysteractomy !

    Mel

  • Hi Mel, thank you so much for your reply. Haring that you managed to have a baby naturally has bout the biggest smile to my face! Congratulations :) it has given me a little hope that I too may have children! I hole that your smear comes back clear for you and you will be in my prayers! Thank you once again for your kind reply! This site has definitely helped me to consider some other options but my gyn is a little reluctant to try me on hormone treatments due to my age and hopes of having children. I've got a follow up for my last lap soon so I may discuss the options with him then!

    I hope you are well and not suffering too much,

    I am happy to listen to you have a rant and offer as much advice as i can (although you are clearly more knowledgable about the condition than I am!)

    Emily xxxx

  • Hi Emily, it is super hard. ive had endo for over 10 years and im sorry to say it gets harder everytime you have pain. it is a harsh reality and it is so not fair. peple dont understand. this site is the most helpful and supportive thing i have ever done. i recently went to the hospital and gynae was doubting i even had it and he is the 5th ive seen, ive moved to another town and a new hospital. im terrified of examinations and i had just had an operation on my bits last weekend to remove a cyst on my lady parts. the examination was so painful my legs were shaking it was pure agony. people just dont have any sympathy.im quite a hard faced person and dont expect people to feel sorry for me and get on with it and keep it all to myself, however you kind of expect medical proffessionals to understand what it is you are going through, its not like ive diagnosed myself. i dont know who in the hell would chose this. i always describe it as cancer, that doesnt kill you, but you certainly want to kill yourself ironically! it is an ongoing struggle, my ex husband was really not supportive at all, needless to say that is one of the reasons why i left him. what kills me more than thee pain is the realisation i may never have a child and if the time comes i may need extensive help, everyone in my familly has kids but i am and have always been the only mothering one who has wanted kids since forever. My partner now, is so amazing. he doesnt understand but knows that the pain i feel is literally torture and it is hard for him because he cant help me. it makes me feel guilty having him come to the hospital with me and be bored and worried out of his mind. i hate making him feel like that so its hard for everyone close to you to watch you go through this. then i start to think if icant have babies its all my fault and in turn he deserves someone who can give him an easy life. but we cant think like that. i now spend every good day i have so appreciative of everything and everyone around me. i am a driven person and i hate giving in to the pain, so i do what i got to do and get on with it if i can and if i cant think of a plan for when i am able to do things. i will not let it take over me. My boyfriend jokes and says i dont like sex but thats his humpour. he is so amazing. If your boyfriend has a problem with it it will show and you will know something is up. So res assured and make the most of a supportive partner because most woman not only dont have a partner but worse one that isnt supportive at all. you will be okay, just make sure you both communicate otherwise it will become very difficult.xx

  • Hi thank you for your reply, Ihave always known I was lucky that my boyfriend is so understanding and supportive especially when he's only 22 I think it's unfair for him to have to deal with what I'm going through too. Joining this site has made me realise even more how fortunate I am to have such a supportive partner, he is my rock and I don't know how I'd cope with the endo without him! I'm so sorry t hear your ex husband was so unsupportive of your condition, like you say its not as if any of us would choose to have such an awful illness! When I first went to the gp I was told it was a form of depression because I had recently lost quite a few people who where close to me but I knew I was not imagining the pain I was experiencing! I have often felt that sme doctors take the attitude that there is nothing wrong with me and I'm making up the pain but I certainly wouldn't choose to put not only myself but my family through the hell that goes hand in hand with endo. It kills me to see my mother and father so upset and helpless, at one point I was being taken to A&E at least once a week as I was screaming in pain. It's shocking that so many people seem to think we've chosen to have this illness when I know that many if not all of us would do anything to not have it! I remember the first examination I had down there and i was only 18 so I was embarrassed and uncomfortable about having it done but the pain was so excruciating that the examination couldn't be completed as the dr had to stop. I am quickly learning to embrace the few good days I do have and am so thankful that I am seeing one of the top endo specialists in the UK, once again reading what some people have said on this site I realise I am so fortunate to have found a gyn I can trust and feel he genuinely cares about my well being (he even asked me to phone him to let him know how I got on with my final exams etc) I'm so glad you've found a partner who is at least trying to understand how you feel and I joke with my partner a lot I think it's an easier way for them to cope its what we go through. As I've had so many surgeries in such a short period I know he always panics that I won't come back to him when I go to theatre and I hate to see the conflict on his face as he is so clearly upset but trying to stay strong for me! Endo is one of the worst illnesses I've come across and I think it's some times hard to remember that although we are the ones in pain, often our loved ones struggle along side us with the mental effects of endo. I too worry about whether or not I can have children as my partner desperately wants them. I pave just taken to accepting that "what will be will be" and I'm certain that one day it will happen for us and I'm sure it will happen for you too.

    I hope your not suffering too much at the moment and just as you have been there for me by listening to my rant and offering support I shall always be here to do the same for you!

    Emily xxx

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