Advice Needed

[hannahlew91]

Hello all, I'm 23 and just had my first laparoscopy in February where they diagnosed me with stage 4 endometriosis and removed cysts and nodules from my ovaries, uterus and bowel. I've had horrendous periods since I was 12 and would be in crippling pain as well as vomiting, fainting etc. My Mum has been asking since I was 15 if I could be tested for endometriosis, but was told time after time that I was far too young to be a sufferer. Two years ago I bought a tens machine which has changed my life, in that, even though it doesn't completely eradicate the pain, it means I can get off the bathroom floor! Before I was diagnosed I applied to be a Police Officer and have been successful and am due to start in May, however now I'm terrified that they are not going to think I'm not fit enough to complete the role. I've always been driven and determined but at the moment feel like the pain is winning. I just wanted to know if there was anyone else out there who has a really active job and how they deal with the condition. I've also been trying to change my diet and wondered if that has helped anyone?

Any advice or tips anyone has would be fantastic. I have found comfort in reading all the posts, I have always felt so alone with this problem and to actually have it diagnosed is a big thing!

[eew_notts]

Hello petal! I've followed this post and am writing this brief reply just to say hello; I'm 23 too, also just diagnosed and also ambitious, active and in a lot of pain quite a lot of the time. I'm currently recovering from a laparoscopy and the associated Endo removal though and I'm about to fall asleep from the strong pain killers but I will be in touch in the morning. I'm intrigued by your use of a tens machine, I've considered it but never actually tried it, I'd be interested to hear more about your experiences.

Anyway, you are most certainly not alone and I would love to chat more in the morning!

Xxx

[hannahlew91 in reply to eew_notts]

Thank you very much for replying! I'm sorry to hear you're in pain too. I would completely recommend the use of a TENS machine, best decision I have ever made, it cost me £35ish from Amazon, I'm on my second one now, and you have to replace the gel pads regularly but the relief from pain that it gives me I would pay a lot more. Ordinary painkillers no longer really work from me and I have pretty horrible side effects from using stronger prescribed medicine and have reacted badly to the pill and other hormone treatment so to find something that doesn't involve putting drugs in my body has been well worth it. I haven't used it since the laparoscopy because I've able to deal with the discomfort and I'm nervous about my internal stitches, but I've used it for period pains for about two years. I currently work in forensics and wear scrubs everyday so it fits discretely under my clothes without anyone knowing a thing, bit more concerned about wearing it as an officer though!

xxx

[eew_notts in reply to hannahlew91]

I've had exactly the same response to painkillers, I normally don't go near them because they don't seem to make a difference to the 'normal' pain but at the moment just a bit of strong chemical assistance is quite welcome. They make me so sleepy they're completely impractical for day to day use though. I've also had horrendous reactions to various hormonal treatments, really terrible side effects that rule out the use of hormones in my mind. They do assist in the 'management' of the pain but the other effects (palpitations, anxiety, panic attacks, cystic acne, tremors, dramatic hair loss, weight loss etc etc) are too much to handle. I've found it really difficult to get any health care professionals to take me seriously, especially as the 'go to' response for menstrual cycle related pain is to prescribe some kind of contraception. The mirena coil and the qlaira pill were the worst.

For pain, I tend to use heat, so heatable Wheatie type products but they're not as discreet as a tens machine so I will definitely invest once i'm recovered from this op.

With regards to your active job and your endometriosis: if you show willing, which you clearly do, then I can see no reason why you should doubt your ability to perform a role in the police. I'll private message you my 'life story' if you ever fancy a chat, I won't deny that the pain I've experienced had effected my academic and professional life in some situations but it can be managed and I often find the injustice of the pain riles me up and makes me more determined to do exactly what I bloody well want to.

Message me anytime for a chat. It's lovely to chat to people my own age! Whereabouts are you from? Xxx

[hannahlew91 in reply to eew_notts]

Painkillers were a definite requirement after my op, though after a few days they were making me vomit which was making the pain even worse. I had pretty much all of those symptoms with each of the pills I tried but had the added bonus of a period every other week and almost constant vomitting. I won't even mention the coil - what a horrendous experience that was! It is unbelievable how little most health care professionals actually do to help, I've been going to the GP since I was 12 and was pretty much just told to deal with it. I saw my consultant privately, and as well as everything being sorted so quickly, it was also nice for someone to sit with me and tell me that it isn't normal and that I shouldn't be suffering in silence. I definitely think our ages is the cause of it though they are really against looking into endo in girls so young.

I completely agree with you about the pain though. The injustice of it has probably driven me more than anything to do everything possible in my academic and professional life. My current boss recognises it so hopefully it will be the same when I move.

Definitely message me! It's such a relief to find others with the same problems, my friends, family and partner are all incredibly sympathetic but they have never quite understood. I'm from Oxford, though soon to be moving, hopefully! You? xxx

[eew_notts in reply to hannahlew91]

Oh God the periods whilst on the contraception were terrible. The worst were with the implant, I was having a period one week on, one week off but for the last six months I was bleeding constantly and was just a shell of a person really. It was horrible. Often the doctors just don't know what to do, which is arguably worse than them being dismissive. I remember telling one doctor how much i was bleeding and he literally grimaced and shrunk away from me like I was about to keel over. Which I possibly was!

My mum had been brilliant with everything I've experienced because she had very similar experiences. My partner tries his hardest but i think its quite easy for men to forget that we do have to deal with periods and all the associated cyclical symptoms. It's just not something they need to worry about personally and it's so hard to imagine someone else's pain.

My issue, according to a number of gynaecologists, is not only endometriosis but also 'intolerances'/'allergies' to endogenous hormones. Which is why I feel worse when I've been put on hormobal treatments. That definitely makes the most sense of my symptoms. I don't really know what to do about that though... A lady on here has been very helpful, she recommended I let myself recover, monitor my symptoms a few months and then potentially seek the advice of a 'specialist Endo' gynaecologist and an endocrinologist. I'm hoping the laparoscopy will have dealt with some of the pain.

Anyway! I could babble on for ages. I'll message you I'm from just outside Lincoln but commute to Sheffield for work and uni.

Xxx

[hannahlew91 in reply to eew_notts]

My Mum also has had similar experiences! She was never diagnosed with it but we have always had very similar symptoms and reactions to things. In some its lucky that I'm gay, my girlfriend is so understanding as obviously she has to deal with periods as well even if they're not on the same scale!

I saw a specialist and I would completely recommend it, my consultant has been absolutely outstanding and really seems to understand me which is fantastic as I've had some horrendous experiences with other doctors before.

I'll look forward to hearing from you then

xxx

[jlmackenzie]

Hi my name is Jessica and i was just diagnosed with stage 3 endo...borderline stage 4 and i am only 22 years old...I suffered for years and have just kept pushing though(even though its hard as hell). Although my job isn't quite as active as a police officer, i am in the culinary industry...which means roughly about 80h per week, standing all of the time, a ton of stress...and little to no rest time during shifts. And i am not going to lie to you, pushing through these shifts sometimes is the hardest thing i have ever had to do. I just want to tell you that even though i sit on my bathroom floor most nights, wake up from a dead sleep with stabbing pains, and pee constantly because it hurts to hold it in...that having your dream job will make you happy.

I don't think an employer would turn you away as long as you work to your best ability then they would be very lucky to have you. The pain might win a lot of the time...but achieving your dream job makes it just a little bit easier to keep fighting. xo

This is off topic but i also run a blog that has had a lot of success and has(i've been told)helped a lot of women and maybe it might help you...if anything you can laugh at some of the things i have to say about this disease and realize that you really aren't alone...even if people won't talk about this problem openly...I have no fear about sharing my experiences and making sure that people realize that the weird stuff that happens to them, and the hardships that they face...are experienced by many

endometriosismyendomylife.b...

[hannahlew91 in reply to jlmackenzie]

Thanks for replying it definitely sounds like you have a very active job!! It sounds really intense, you should be really proud of yourself that when you're in so much pain you still manage to give your all to your job! I've been really lucky at my current job, as I've worked so hard since I started they know that now I've stumbled a bit that there must be a really valid reason, it's just difficult to know whether a new employer will be as sympathetic. It definitely just feels like we all have the biggest fight ahead, getting this new job was definitely the easy part.

I'll definitely check out your blog, it sucks that this subject is so taboo so it's nice to know that you're making light of the situation! Xxx

[Austin_S]

I've been a police officer for 11 years and was diagnosed about 2 years ago after years of suffering. The job is understanding I had 2.5 months off after my last lap after complications when I went back I was in plain clothes for a while. I wear heat patches under my armour when I'm struggling and I take it of at every opportunity as I find it aggravates my back symptoms. I take serraptesse, macca and a multi vitamin which I find helps, working shifts you need to make sure you get plenty of sleep as they sure do take it out of you! I changed my diet to try and eat fresh fruit / veg and cut out bread . If you need any advice just let me know

[hannahlew91 in reply to Austin_S]

Amazing! Thank you so much for replying, its so good to hear that it is possible! I'll look into getting some multi vitamins as at the moment I am trying to cut out gluten and dairy as it's said that they both can aggravate endo! How often have you had to have a lap? I was told that I will probably need at least one a year

[Austin_S in reply to hannahlew91]

Look into serraptesse I found it really helps. My last one was sep 13 and I've got another appointment in April to decide if I need another. I tried to go gluten free but really struggled to do it completely , there is research that shows eating organic is good too. I try to eat organic but it's not always possible.

You're endo sounds bad if you need a lap once a year, what stage are you?