Hi ladies, im 25 and feel my world is falling apart. so confused and upset about endo/adenomyosis, infertility and bowel issues please help!

Hi ladies, this is my first ever post to the site. I am feeling pretty low at the moment and alone with dealing with all of this as my partner has just left me for a 'break' and moved away. My health has now affected my relationship, friendships/social life and now I am about to loose my job because of 2 weeks off for laproscopy and ongoing hospital appointments and days where I am in too much pain or too off my head on painkillers to be able to function at work. I am a designer so have a fairly pressured workplace. But this is my dream job I have worked so hard for and relocated to get 6 months ago and now because of my stupid health I am on the brink of losing it. Does anyone have advise on how to fight my corner with this? I want to believe I will not always be like this and my health will get better or become more manageable! In the last 6months since a laparoscopy in January I have been shifted from pillar to post with doctors due to moving and different views on what's going on with me. I was told when I came around from my laparoscopy that my tubes are totally blocked and the doctors words 'you will probably never be able to get pregnant' his kind assumption was I must have this because of STI as I am young, this is not the case all bloodwork/ swabs proved it. They did not find any more endo (had some removed in December 2012 from pouch of Douglas). I am devastated about this as I am very maternal and desperate to be a mother in the next couple years... Plan was to wait for job to be secure!! I want so desperately to understand why this has happened but the docs give me no answers, surgeon then said I may have 'salpingitis' which could be caused by TB so this stressed me out loads, but my new docs have refused to do any testing for this passing it off as rubbish. Since the op, I have had deteriorating problems with my bowels, constipation now to the point I am totally unable to pass stool without 'manually removing it' sorry for tmi I am beyond any sort of dignity these days. I use laxatives/suppositories/ enemas to try to go everyday. On Tuesday I had a proctogram.... As they suspect my colon may have prolapsed. If anyone else has experienced this test I feel for you, I would have rather been punched in the face several times! I cryed my eyes out! During this i began to bleed, was very humiliating, and since then I have continued to bleed from both my front and in jelly like clots from back end too. My gp just shrugged this off, they do most things as they don't seem to have a clue what's going on with me. My sex life is also now gone from bad to non existent as the pain and bleeding afterwards I would put up with has now become quite a lot of bleeding straight away during sex, so embarrassing and my partner is kind but has put us off trying any longer. I just want to feel normal again :( I am so worried now about losing the love of my life from all the stress on us financially and emotionally and because he is also so desperate to be a dad. I'm worried of losing my job and most of all I do to know where to turn or who to believe now with doctors. Does anyone have any advise please on tests/medication I can push for or your own experiences with fertility investigations or bowel stuff and is this linked to your endo or adenymiosis? I do wonder now if my continued pelvic pain and bowel stuff is in the muscles. Thanks for listening sorry this post is so long and moany! Xx

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  • Hi Foxface, firstly I just want to say I am sorry that you are having such a tough time. I really feel for you.

    I'm afraid I can't offer a whole lots of advice but I wanted you to know your post hadn't fallen silently into the ether!

    I had similar problems with getting a diagnosis, it took around 9 years in the end. I don't know if this is an option for you financially but in the end I was so fed up of being fobbed off that I made an appointment with a private specialist. He recommended the right tests and wrote to my GP to state what he had recommended. My GP then basically said they had to refer me for the tests as in the face of this letter it "would be irresponsible not to, just in case" The appointment with the specialist cost about £150 but it opened the doors in the NHS that my GP was blocking! Needless to say the specialist was right!

    My other piece of advice is to look into bioresonnance treatment. Its used in hospitals in Germany but here its still considered a bit of a "hippy" treatment. Its helped me a lot and a woman I know who does it (who used to be a nurse) has had a great success rate helping women with various gyne issues to get pregnant. I know its a massive worry and of course I'm not a dr but sometimes Drs a wrong so I would try to focus on getting well and cross the pregnancy issue when you get there. That's what I'm trying to do otherwise I cry. A lot :)

    I'm not sure where you are based buy I can give you a couple of numbers for Bioresonance if you are interested!?

    Thinking of you xxx

  • Hi callmeelle thanks so much for replying to me. It is nice to have a friendly voice on a day of pain and feeling lost. I know you are right about the fertility thing it is best to cross the bridge when you come to it, a lot of days I feel good and positive and others I just feel bleak you know?! That would be great if you could give me some numbers I am based in the south west. I would really appreciate any new advice and 'hippy treatment' sounds good as to some extent I am loosing faith in investigative surgery and worried if the surgeries I have had may have caused the infection which led to my tubes being blocked and the possible collapse of my bowel I am suffering with now, as both issues have resulted after laparoscopy. I just want answers really, but I suppose I have tried to come to terms with the fact I may never get the answers I want as to why all this is happening to me?! Do you feel like this too? How is your health at the moment, what treatments are you recieving to help with pain management? Do you find it difficult to manage work? Sorry to ask so many questions, just good to talk to people in similar situations! At the moment I am my recieving any treatment for endo or the suspected adenymiosis as I am reluctant to take the pills which put you into menopause or to even take the pill anymore as it makes me so hormonal and I was on for 10 years but my mum died of breast cancer mid 30s so I am concerned about the risks taking it for so long! It's difficult to know what treatments are best to preserve any fertility I may have too. I'm glad you had such a good experience with the specialist I think this will spur me on to do it, as I've been keen to, but my gp said it would make no difference. How did you find your specialist? Many thanks for your help and support. Hope you are having a good pain free day in the sunshine xxxx

  • Dear Foxface,

    You can ask your GP for a referral to an Endometriosis Clinic (for the South West check here: endometriosis-uk.org/find-l... Your GP might want to balk a little when you ask for the referral but, in principle, they will refer you if you request it directly. I know that dealing with doctors can be 'frustrating' (to put it politely) (I have felt (and feel) like punching people just to see if that would make a difference, might still have to try that one...) but stick with it. Of course, as CallMeElle has stated, you can go see a private specialist but they do come with a serious price tag.

    In relation to your job: ask your manager for a meeting (either formal or informal) to ask for their help in this issue. Ask them for the absence policy and discuss the possibilities of a referral to occupational health (OH). This might not be an easy thing to do, as I know it can be 'uncomfortable' to discuss private issues with your employer, but they might actually be willing to help. OH would not be able to make your health any better directly but they can get other medical professionals to take notice and start taking you seriously.

    In relation to your relationships: talk to your partner. You are 25, I can only take it that your partner is of similar age and I can understand that both of you are thinking of the future and starting a family. Although getting pregnant might be the most desirable way of doing so, it isn't the only way. You are still young enough and you could look into IVF with your specialist but you could also look into fostering or adoption. The last two options might not be the same as giving birth to your own child but it doesn't make you less of a parent.

    Just know that you are not alone. If ever you want a chat, let me know.

  • Hi Foxface, yes I know exactly what you mean. Mostly I look on the bright side and mostly I think I'm lucky it's not worse then I have a really bad day where I feel, why is this happening and what if I can't get pregnant. As Drangonsfly said it's not the only option but it is scary so I totally understand.

    I'm seeing my bioresonance man for a treatment tomorrow afternoon so I'll ask if he can recommend anyone in the South West (I'm in Oxfordshire) but I think the lady who my mum sees does some work down your way. I'll get hold of her details for you. The man I see does biores, acupuncture and sometimes some cranial osteopathy all in one treatment so it's a good all round treatment and it has helped!

    At the moment I'm not too bad. I guess I'm one of the lucky ones in a way that my pain, the pain that takes me off my feet, tends to be only a few days a month and the rest of the time I'm just sore and uncomfortable, bloated and really tired. I've found that a combination of bioresonance treatment, evening primrose oil tablets, and exercise and bulletproof coffee are helping me a lot. Pain wise, at it's worse I have to confess I've not yet cracked this. The bioresonance man is looking into the for me at the moment to see if he can find something that is as strong as cocodamol but that won't make me constipated which makes the pain and bloating worse!!! Will let you know if he finds something good! I work for a company connected with health and education so they have to be understanding and are generally pretty good. Not always but generally. It sounds like good advice from Drangonsfly to sit down with someone and get an OH referral. Is there any way you could work from home some days? Would that help?

    For your hormones I would highly recommend evening primrose oil. I took it for several months and felt more balanced but it wasn't until I ran out and went without for a few days that I realised how much they were helping as I was a weepy mess without them. They may not work for everyone but they really work for me.

    As Dragonsfly said the specialist does come with a price tag. I would never if been able to afford to have the lap done privately. I think I was quoted about £3k all in so total so way out of my price range. To be honest the £150 wasn't ideal but I am so glad I did it in the end. Once I had that and I was able to see a gynaecologist back in the NHS the treatment was great. I should have made a complaint about the GP but she retired so there seemed no point. I only went to the specialist out of frustration and just to get the ball rolling as I couldn't get my GP to listen. To be able to go back to the GP armed with a letter that I needed the lap left my GP with no choice but to refer me.

    Hope you are having a better day and as I said I'll ask the bio man tomorrow for recommendations in the south west.

    Take care, Elle xxx

  • Here is the man I go to if you want to look into it in the mean time....http://www.chrisboardman-rosedaleclinic.co.uk/acupuncture

    Xxx

  • Me again! :) Chris said he doesn't know anyone down your way off the top of his head but he is happy for you to call him and he will have a chat with you about things. He's a really warm man and he knows about a wide range of treatments so might be worth a call! Good luck! (Chris' clinic in Reading- 0118 9866635) x

  • Sorry I haven't been on for a bit - actually have had a pretty good week pain wise since my post proctogram meltdown - still awaiting my results tho which is somewhat frustrating as I am sure they're reaction during the test suggested something was wrong- hopefully will find out next week! Thankyou so much for your replies and kind help dragonfly and Elle. Dragonfly - i did sit down and talk to my boss this week after researching, and reading your kind advice. Unfortunately I am not able to gain the referral to OH or to have the standard employee sickness help in my job right now as they have very well covered their backs - I had a long 6 month probation period, altho I did actually work for them for 3 months prior to this as an intern. I was told that I did not pass my probation due to my illness and attendance affecting my work - in the first month I had my lap and missed 2 weeks they new this before they gave me the job. Since then I have been off sick about 5 times altho I am often in bad pain at work, I have had hospital appointments and doctors which I have always made up. I have now been put on an extended probation of another 3 months where I must 'prove myself' I have a feeling they will just dismiss me at the end but are prolonging this in order to cover their backs someway. It is all rather confusing and stressful to work out!! But I worry about starting a new job with potential surgery on the horizon and endin up at square one! Thanks so much Elle for your great help, I think I will give Chris a call and find out more about this treatment. I will also try the evening primrose oil as anything which helps me to hold back the tears at work at the moment would be ace! I do feel very hormonal sometimes!! And the desire to be able to have children can be overwhelming sometimes, especially when I work designing children's and babies clothes around pregnant ladies and with babies and kids around all the time! I know it is true about adoption and Ivf I can and will try everything when I am strong enough and secure financially, maybe we we're like this so we can have the strength and love to give to a child who otherwise wouldn't have it :) as we can't all be popping them out left right and centre can we! How are things with your health Elle? Where abouts is your endo? So good to hear the bio resonance is working for you. Does it cost much? I will look into it. Hope you have a lovely weekend xxx

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