Diagnosed: Hi everyone I'm new here, I just... - Endometriosis UK

Endometriosis UK
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Pinkdancer13
Pinkdancer13
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Hi everyone I'm new here, I just been diagnosed with endo a week ago. It was on both overairies, fallopion tubes, back and front of womb and on my bladder so quite bad, I have had some of it removed. But now worried about been able to have children in the future I'm 26 and no where near ready for children yet. It's scary and feel like I don't know what to do or where to look as I have it bad any advise what i can do so in the future I be able to have children. Thank you

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Chloes161290

Hey I had endo removed from similar areas it was even behind my womb which they couldn’t get too, I hadn’t had children at the time and worried but when I was ready I conceived on my first attempt so don’t let it scare you of that. Hope this helps x

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PawPrints

Hi. I am also 26 and waiting for an ultrasound. Back in 2010 I had an ultrasound and they found chocolate cysts on my ovaries but my doctor told me there was nothing they could do and to take paracetamol to manage the pain. I have suffered with severe period pain and pain during sex since then and finally went back to my (new) doctor last month to ask for a second opinion. I am also very worried about whether my fertility has been compromised given how long this has been going on. Can I ask what were your symptoms and how did your case progress from when you first went to your GP? Thanks x

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Pinkdancer13

Hi, I have suffered with the pain for a very long time since I was about 12, I started my periods when I was 8/9 I had always had trouble with my periods always time of school so I have been suffering for a very long time. When I was 16 I went to the doctor and I started contraception but it didn't stop the pain. I have always been back and fourth to the doctors for years been on varies pain meds, even meds to thicken my blood up but still didn't work. I get a lot pain most of the time and somtimes more after exercise, sometimes out of no where it would come on. I feel dizzy and somtimes im sick with it. I have pain after and during sex. I kept going to my gp and they would just give me different pain meds quite strong ones which at being young isn't good to be on. So 2 years ago I went back and I really pushed with it and they finally referred me to gyno and with in few months I saw them and they scanned me and couldn't see anything so said it be wise to just have the Mirna coil fitted as that would be the outcome of what ever they find if I had surgery happen and if I did have endo. So 1yr and 4months ago I had it fitted was a struggle because I'm so small but they did it. And then September this year I went back to the doctors because I was still suffering and I couldnt cope so referred me back to gyno I saw them in October and 4 weeks later (only last week) I was having my Laparoscopy and then they told me I had endo pretty bad. I had some of it lazered off but it was in lots of places even on my bladder. So my advice is to push for the doctors to be referred there are some amazing people out there that will listen you just need to push for it. But also there is medical history in my family of problems my mum has endo but not bad as me had the coil fitted and was fine and my nan had to have her womb removed by the time she was 21 because of problems. I am very worried about my fertility and they didn't tell me anything about it or give me advise to where I look. So I came here. Hope this helps a bit. I'm a bit new to it all.

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PawPrints

Hi, thanks for responding. You poor thing, sounds like you have been through an ordeal. My symptoms sound very similar to yours. I have been on a progesterone only contraceptive pill since 2012 which I found helped with my periods slightly but in the last few months they have been getting worse. The pain in general when I’m not on my period is getting worse too hence why I went to the gp. I have previously visited the gum clinic to get tested for everything else and that all came back clear, but no one other than my old doctor ever mentioned endometriosis so I feel your pain when you say that no one has really given you information. That is the reason why I’m here too. It’s scary that Endo can’t usually be seen on ultrasounds. I’m a bit worried about mine coming back clear and they just sending me on my way with no further help, but as you say you just have to keep pushing. I am also small and the thought of getting a coil fitted fills me with dread. Do you need to go for other surgeries? Did the surgeon mention anything about your fertility at all? X

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Pinkdancer13

I had to have local anaesthetic to have my coil fitted that was the horrible part. At the moment I don't need any more surgery but they said in a year or so I probably will. They didn't say anything about fertility so yet again it will be something I push for and get some advise about. Also a year ago I got 3 kidney and bladder infections with kidney stones within 6 weeks so it make some think whether the endo being on my bladder, contributed to those to. But I will be trying to get some advice from my doctor's of where to go for advice and I will insist they give me some as it's making me feel so crap about it all. Xxx

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Eraj
Eraj
in reply to Pinkdancer13

Very first thing you gonna do is find BSGE centre near your area and asked your GP to reffer you there,dont waste your time with general gyane if they shaved the tissues this does'nt work and come back again very soon,if you decide to go for lapro go for proper excision lapro it helps to increase your fertility chances naturally also IVF option is always available for endo patients,I know you are so young n I can understand how worry you are from your future but take a right decision on a right time is important,so best of luck n hope you get a better solution from your endo specialist relating your fertility chances etc.Stay possitive its not the end of the world x.

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applebird

p.s. if you are having surgery again in future make sure it is excision surgery with an endometriosis specialist as it is more effective long term. Here is a list of endo centres and doctors in uk. x

bsge.org.uk/centre/

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applebird

Hi, I was 24 when referred and diagnosed at 25. After my first laparoscopy the consultant who spoke to me explained they'd found stage 4, were booking me in for a major lap in 3 months time and that if I couldn't get pregnant 6 months after that I would be going straight for ivf.

What a bombshell!!

I at the time had no remote notion of settling down until about 33 and my boyfriend (now husband) was still in the extended adolescence stage of manhood. Thankfully another doctor had overheard what happened and came and spoke to me - her advice was that if I really wanted children not to leave it past 30.

We went through a very stressful few years and 4 surgeries by age 29, by which point we were married and we had our son. After all the pressure we were put under and talk of going on ivf, little chance of conception etc etc - we conceived the first month we tried, had an early miscarriage, took a break for a month, tried again (another early miscarriage), then conceived our son the next month.... So severe disease doesn't necessarily equate to zero fertility by any means, my issue was a patchy womb with concurrent adenomyosis (difficulties with implantation) and endo can create a negative biochemical environment in the womb presenting probs with implantation also.

What I would do now you've had the surgery, is get onto the pill or have hormonal injections to stop periods (it induces a temporary menopause but it isn't so bad). Doing either of these things will help you get the most of your surgery longterm.

Recover from surgery and focus on getting better before anything else.

Start thinking about your long term priorities and make adjustments if necessary; ie. if you are dating someone and think they would be a rubbish life time partner do not waste time on them just because of short term perks. Don't get stressed about settling down straight away if it isn't what you want but just cut the cr*p quicker.

Make lifestyle adjustments ie. follow endo diet and take care of yourself well. Lots of things can aid pregnancy when the time is right later on - having another laparoscopy and a course of prostap or similar prior to trying, again endo diet, fertility acupuncture, conception multi-vitamins, cutting out alcohol, losing weight, bbt tracking etc etc (I did all of those things and believe it helped). And if you do have to go for fertility treatment there are lots of success stories.

Overall - live your life, be happy, there is no point stressing or feeling bullied by the condition (I've been there and it causes you so much harm). Have faith that your time will come and that there are lots of things you can do to get there. Please msg me if you need anything as genuinely understand what you're going through.

Hope you feel better soon, everything will be ok xx

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