14 years and counting.....!!

[johewer]

14 years ago I started the long battle to diagnosis!

When I was 15 I had my first laparoscopy & was diagnosed with slight endo. Diathermy (lasering) was not even discussed back then, however, after my op I was put on the contraceptive pill on back to back packets so that I would not have any periods & the growth of the endo would be controlled & therefore pains & periods were meant to be non existent.

Needless to say this did not set me off to the greatest of starts during puberty, moods, pains & bleeding were all over the place. The following years resulted in more scans, blood & urine tests etc only to find intermittent cysts & no improvement in my situation.

At 19, I went back to the gp, was referred to specialists under the normal process, blood & urine tests, ultrasound scan, (the usual process of ellimination)... I had my 2nd laparoscopy & this time recieved some laser treatment which relieved me of all symptoms straight away. Shortly after this 2nd operation I made the choice to stop taking the contraceptive pill which helped me so much & I wish I had done it sooner! my periods regulated and my quality of life improved greatly. Not long after I met my now husband & decided after discussions with my gp that I would start the contraceptive injection (deprovera), I loved being on this, no periods, no pain, no moods! - best invention ever

But as the years went by the state of my fertility was always at the back of my mind, after 5 happy years with my partner he proposed & I said yes! At that time I decided to go back to my gp as I had been experiencing some mild pain. I was referred and insisted on another laparoscopy....I had this 10 months later to which they found more extensive endo & clubbed fallopian tubes. The specialist decided to remove the endo via laser but do nothing about my tubes (claiming that she had nothing to do with fertility and therefore was not within her juristiction to deal with my blocked tubes).

So there I was: 26 years old, 3 laparoscopies (2 of these with laser treatment) & I had been stitched back up with my tubes still blocked. After our wedding in 2012, I stopped having the contraceptive injection in a view to conceive & start the wheels in motion to getting my tubes unblocked!

I am now 28 (still no baby!) & waiting for a referal to a specialist and after literally begging my gp I have been granted an ultrasound scan tomorrow. I am constantly in pain, suffering with stomach, back & leg pain, constant constipation & then spontaneous bursts of dioreah & I can feel that the endo has returned with a vengeance! I have got all the typical pains, irregular & very heavy bleeding and I feel totally at the end of my tether & quite frankly exhausted.

But of course now fertility is the main question, the gp has become very unwilling to help.

I know there is a certain time limit into how long a woman has to wait to see a specialist when trying for a baby but I dont find it very fair that women with such an extensive previous history of endo, cysts etc can be put in the same catagory as a "normal" healthy person who is trying for a baby. My partner has 2 children from his previous marriage & therefore there are only certain fertility treatments available to us on the nhs. I am hoping that this week with a scan & follow up appointment with my gp that it will lead to an early referal for me & I can get some answers on available treatment as I am not even sure how many laparoscopies they will carry out in a lifetime ??

Everyone here is in the same boat & I would love to hear back from anyone! 14 years in & this is my first time of sharing my experiences to anyone other than friends and family xxxxx

[lillyflower]

Hi, I know how you feel and sorry to hear your exhausted with all the pains and worried about fertility. I am in a similar position although only recently diagnosed. At my follow up appointment I was asked to choose between fertility or pain relief! The gyni was very unhelpful about what fertility treatment I could have on NHS and so after doing my own research have now booked an appointment with my doctor to ask about being referred and hopefully get some answers of what options I have. As the pain is bad like yours especially my legs at the moment and woke up shouting someone was stabbing me in my back! Because of this I chose to have pain relief and he has suggested trying pill back to back but I am worried about the side effects and from reading your post that's exactly why I'm worried. I too have blocked tubes so will need to have them removed before IVF from what I've read. It's so hard to get answers from doctors and to seperate the want for a baby or the need for pain relief is an impossible question when you want both. Good luck with your appointment and I hope they refer you so you can find out what help you can get.

After my lap I was so shocked by the diagnossis as wasn't expecting to hear tubes need removing, and worrying about if I'm stuck with this pain forever and will I ever have a child allgogot a bit much and ended up at doctors who prescribed nortriptyline which has helped me to stay less teary and clear my mind to think properly rather than feeling overwhelmed and like I was stuck down a hole with all these worries piled on top of me. So I just wanted to reply so you know your not alone in your worries and I hope you get referred to someone who can help soon xx

[johewer]

Well had my scan today & my ovaries & womb look like they are all good & healthy but as my thoughts, endo or Fallopian tubes don't show up on an ultrasound. So I still don't know if my tubes are still blocked but had a bad few days with pains so as there are no cysts I gather its all down to endo re growth. Seeing gp again Thursday to discuss the results & to try & beg him to refer me again. I've read into what can be done for blocked Fallopian tubes & the answer doesn't seem to be an awful lot. seem to be that people have their tubes removed or the tubes are just completely bypassed for IVF which I don't qualify for on the NHS anyway so good news for my ovaries but still got all the same questions ref my tubes xx

[lillyflower]

Hi that's good there's no cysts. As far as the tubes go I have hydrosalpinx which is fluid in both tubes so know if I have Ivf they need removing or capping as fluid is toxic to embryo. Did they do dye test to check tubes? At my follow up appointment my gyni was very unhelpful and said removing tubes may not help with pain but the swollen feeling I get makes me believe its not helping the pain along with endo I think everything must just be very irratated by both. He sugested going on pill back to back but obviously that doesn't help with getting pregnant so off to doctors next week for more info. He did say fluid can be sucked out of tubes and I've read about reconstructing tubes although this is tempory may be an option for you if you can't afford IVF. I know I can't afford it so if my doctor doesn't refer me that's it for me! So asking how they can help to clear tubes would definitely be worth asking about. I don't know if you saw my last blog but some ladies have given me some good info about the tubes issue! Good luck with doctor and I hope you get a referral to check tubes and hope they answer your questions. I know I'm hoping my doctor will be full of answers next week too! Xx