Log in
Endometriosis UK
39,825 members34,251 posts

All this effort does pay off - my story - hope it helps !

Hi, I hope all of you are having a great Friday, or as good as it can be xx

Just wanted to let those of you whom are starting your journey with endometriosis that it all does go somewhere and it is worth all that effort!

I am four months post lap and have my first month almost completely pain / symptom free since I started them, yay, here's to this now being my future for at least a while.

Here's my story (it's long, as are most of ours); I started my periods age 11, they've always been painful, crampy, really heavy with bloating, headaches, dizziness. Everyone ignored me. At 18 I stared uni so thought I'll be more in control of my cycles if I go on the pill, so I saw a doc whom put me on microgynon, which worked brilliantly for about 6 years. Then all the symptoms came back, my current doc said 4 monthly back to back may work, so we trialled it for a year, it worked well. I continued with that for another 4 years - leads me to being about 28. During that time I managed to push for an ultrasound scan for PCOS, as the cramping was occasionally still there, along with the weight gain, hair growth, deep voice, plus it's in my family. They diagnosed possible PCOS but was ruled out by my GP after coming off hormones and having blood tests. At 30 I decided to come off the pill altogether as all my symptoms were back even on the pill, so it didn't seem to be working. After coming off it, I was okay for about a year. Then bam, all my symptoms and more came along; the pain during ovulation, lower back pain, more bloating, horrendous headaches, really heavy bleeding (pad and tampon every hour), deep pain during sex, regular thrush and a sharp pain during sex, spotting after sex, and cramping after. I didn't know what was going on but I was adamant that it wasn't normal, the GP wouldn't pay attention.

I coped for three years then went to see a different doctor with all my notes of what went on - June 2017. She was really kind, and helpful, we explored ideas of what it could be (endo, pcos, fibroids), she decided initially on a cervical swab - results were inconclusive, on visual examination she found cervical ectropion (sensitive cells from the top of the cervix appear further down) this explained the sharp pain and spotting, plus thrush. She said it's not something people look for or think about. I was referred under NHS to a gynae specialist - basically put on the waiting list - updated - this took until after my first lap 4 month follow up for the initial appointment to come through - so about 8ish months.

When I looked into it all a bit more after I'd spoke to my GP I found my work has health insurance so I chose an endo, heavy period, fertility private specialist through my work insurance. I saw him a month later July 2017 - we decided on treating the cervical ectropion and exploring the other symptoms with an ultrasounds (including transvaginal). Those came back with a 2cm fibroid that he'd decided wasn't a problem. He wanted to do a diagnositic lap with hysteroscopy and biopsies as he was convinced it must be endo. I really like that he didn't push for hormones etc, just wanted to get to the base of the problem. My specialist performed my op November 2017, and found endo all over my bladder, uterus and a bit on my bowel, it was all over my ligaments in there too, and sticking stuff together. He removed and unstuck everything apart from the bowel one as that needed a specialist. The op was a day case, really quick and brilliant experience as far as ops go. He predicted a 50% reduction in symptoms.

At my follow up 4 months later we discussed the idea of removing the remaining bit on the bowel; as I was still having some symptoms around the bowel area, plus cramping and deep pain when my bowels are full. I saw the colorectal specialist he works with. They both agreed to the operation. This went ahead July (2018) just gone, it was an overnight case, and recovery took a lot longer; I was signed off for 5 weeks as opposed to the two with the previous op.

I have developed lower back pain during that time which means I now see a physio and a movement specialist for, they have both mentioned that the ops and the endo itself are the cause of the back pain; the ops on the core and the endo affecting all the ligaments inside that hold stuff into the pelvic bone – this results in a weaker core and the lower back compensates. We are working on improving my core through focused exercise and mobilising my lower spine to help future recovery. My specialist was expecting a 90% reduction in symptoms, and hopefully no endo problems that he needs to be consulted about for 2 years ish. I know it’s just a prediction.

So far all my endo symptoms have reduce dramatically. It's now just period cramping which I can manage with yoga, aromatherapy and meditation, sometimes the odd painkiller. I have no problems in-between periods, no pain during sex, no random spotting. It's amazing, I have my life back! Periods are lighter, well probably what they should be now. I'm back to my polefitness, yoga, gymnastics rings, with no problems. I know it won't be forever but at least I can get on with stuff for at least a year, then we shall see. I'm not planning on taking any more hormones; I definitely think the laps are the way forward.

I am now almost 35 and realise I may not have much chance of having children due to my age even though I’ve been given the all clear but this has given me a different outlook on life; we can’t spend all out time and energy wanting what sometimes just isn’t the path we’re on. I’m not religious but I am spiritual; there are some paths that we are meant to take and some we can choose; I accept where some paths lead. I live each day as if it were precious, I appreciate those that are with me and help me through stuff, those that don’t put the time into knowing me I don’t give them the time either – time is precious – let’s not waste it. I love my partner and I know he loves me. I focus on the now, and what happens is just it, I can’t change it, endo hasn’t chosen me, it’s just there, so it’s not going to control me, but it has made me who I am and that’s okay, I’m okay :)

I have just had my 4 months follow up appointment with my specialist - and it's great news; based on my symptoms now and my recovery from both my ops, he doesn't expect to need to see me again for 5 years! My symptoms have decreased by 90% which is 40% more than he expected therefore I seem to be managing fine. Obviously I now know what I have and should it get worse I know what to do / whom to see / what the process is. I know that symptoms can worsen quickly and the amount of time with less symptoms isn't certain - but just knowing I'll be okay for a while really helps

Hindsight - would I have been more confident and pushed for a diagnosis sooner when younger rather than suffering - yes definitely. Knowing what I could have done and how much I suffered thinking it's normal or feeling I'm being ignored; I definitely know pushing for a diagnostic lap to have confirmed diagnosis at a younger age could have shaped my treatment, my view on life, my confidence in my own body, and my own self confidence.

I hope this is an inspiration to some of you whom feel this is all a scary daunting thing, it isn’t and everyone has their own story; but we can learn so much from each other.

Thanks to all those on here who have helped me through the last op and recovery xx

13 Replies
oldestnewest

Thank you it was very helpful to read your story. I’ve come to a diagnosis quite late - I’m 46 and have only just been diagnosed (Laparoscopy and hysteroscopy 9 day’s ago). I still don’t know exactly where the endo was found, only that it was treated. Glad to hear how positive your feel further down the road! X

1 like
Reply

hope you have a chat with your specialist soon so you get to find out where your endo was and how it was treated.

be kind to yourself and enjoy the "new" you :) xx

1 like
Reply

Good evening I love the paragraph where you start saying “I am now almost 35” and everything you said. I got diagnosed last year aged 36, it’s been a tough journey as I also have other illnesses too. I am waiting on my laparoscopy and so glad I joined here as it’s probably not as bad as I fear, grateful to all the ladies on here for advice and we have somewhere to turn to when we need it as we don’t always want to chat to our friends and families. Really because they don’t understand. I can sometimes feel down with everything that’s going on & feel less of a woman because I don’t have children, I know I wouldn’t cope as I am so tired all the time and have other personal things to deal with too. We need to focus on what we do have, instead of what we don’t. That’s what gets me through the tough days x

3 likes
Reply

aww thanks :)

it's tough all this stuff. You shouldn't feel any less of a woman, you're looking after yourself.

I just keep things simple; be grateful for what we have, to love ourself and appreciate how much those around us care xx

1 like
Reply

What an amazing post, it has actually bought tears to my eyes (I’m a bit emosh anyway as it’s time of the month 😂).

I understand and appreciate endometriosis is a battle, I’ve been through that battle myself however I love the positivity of your post. I’ve had two ops this year and refuse to let it rule my life anymore.

I’ve completely changed my lifestyle since my op. Regular exercise, overhauled my diet and take plenty of supplements. It’s really helpful focussing on all this positive.

Thank you again for the post. You can get. through this ladies!!!! X

2 likes
Reply

aww, thanks!

your positivity is great too :)

we will not let it rule us, we will have our life and live it how we want to - well for most of the time !!

Reply

Thank you so much for such a positive and inspiring post. It's really really helpful to read a story like this and gives hope to many of us, which is exactly what we need during these dark moments. I'm sorry you've had to go through all that but a ending giving hope to us x

2 likes
Reply

It's good to know you're not alone with how you're feeling, and it's always nice to know what happens next. All our focus for most of our life has been cope with whatever's going on and feeling stupid every time we talk to doctors, then to be finally heard and told it may be endo so need a diagnostic lap, push lots for the lap, that's it, we're there! We never really put thought into "what's after that?".

My biggest worry was what if it's endo? how will I feel knowing? how will I cope? do people have positive stories? does life get better? I didn't need to worry; everyone on here is super supportive, it's like talking to close friends, everyone is so open. So I thought I'd give something back to you all :)

I'm glad it helps, and hope it pulls you through the dark moments xx

1 like
Reply

I was really interested to read that you aren't on any hormone treatment now or daily painkillers (which is where I would ideally like to be). I'd be interested in what else you do in terms of diet/exercise and supplements to help manage your symptoms.

I was diagnosed in November at the grand old age of 37! I've read up a lot on supplements and I'm back to doing gentle pilates to strengthen my core again but its always useful to learn from other people:)

1 like
Reply

Hey, sounds like you're doing the right things :)

I do still take painkillers, but only for the week around my period now, whereas it used to be pretty much all the time. I can mange on paracetamol, ibuprofen, (2 together if needed) and have a prescription of codeine with my GP for when I need it; a pack of 28 has been keeping me going for about 5 months and I'm only half way through it, so that's good.

I do polefitness, core strength and gymnastics rings, and even though I sometimes get period cramps these have definitely lessened them or made me more positive about getting through it all. Plus with polefitness there's sooo many women to talk to and they've all heard of endo, so it's great to just be able to say "go easy on me I'm having an endo day" lol!

Diet; from a few years back I've reduced dairy and wheat (sensitivity to both); I have soya / almond / hazelnut / coconut milks. Yoghurts and cheeses are still okay with me but I don't have much. I go for wheat alternatives such as lentils, rice, egg noodles, again as it's a sensitivity I still have small amounts. I've reduced my red meat, and swapped it for chicken and fish. Lots of fruit and veggies! I'm working on reducing my sugar but I do love a bit of good chocolate during my endo days.

I'll definitely look into pilates!

1 like
Reply

Thanks. It's reassuring to know that your diet is pretty similar to mine. Hopefully when I'm further along post opp I'll be in a similar place. 👍

My surgeon predicted 50-80% reduction when I'm 4mths post opp but I'm only halfway there now. Like you I'm working on sugar reduction next (though eating a piece of dark chocolate as I write this....) 😂

Reply

Four months seems like a good plan :)

It took me about that to recover fully from my op to have an idea of how i'd be. Let me know how you're getting on.

lol my thing is dark mint choc. There's a brilliant company; Norfolk Chocolate Company that does sugar free chocolate bars, they're amazing, they do loads of flavours dark and milk, like mint, orange, ginger, strawberry lol! They taste like normal chocolate but better.

Reply

I just had a big cry reading your story. Thank you so much for taking the time to write it.

I am so glad this has worked for you - yeah it may come back but also - it might not! And you're so much better off right now it seems it really was worth it.

I'm so adverse to getting a lap... I feel so protective of my womb after having the mirena (which i KNEW wouldn't be right for me but they forced me to have it, it was the worst pain I've ever had) and I don't want them ferreting around in there.

It's interesting that you had a 2cm fibroid too that they dismissed - that's what I'vve got right now, it's just that my symptoms that they're saying is endo have happened since the arrival of this fibroid.... 3 months of bleeding for 3 weeks at a time and these horrible constipation stitch pains in my womb (not my bowels). I've always had bad periods but these pains are different, the bleeding is not normal and it's still getting called endo despite the fibroid being there.

My diet is brilliant - I've never had caffeine, very rarely have alcohol and even then it's just one glass of red with a meal once a month MAX, never had red meat, only white meat I have now is fish, no milk and rarely any cheese, dark chocolate only no more milk chocolate, the only thing left that I can cut out is wheat (which I REALLY don't want to do but it's the only thing I haven't tried RIP pasta and bread :( ) and so I feel a bit frustrated diet wise. Lots of fruit and veggies but I'm going to keep it up as it's basically my diet anyway.

I'm really glad to have found this forum as it's some solace at least. My sister has just had her lap and been diagnosed with endo stage 4 :( so we're both going through it. We also both want babies in a few years but we'll leave that in God's hands. No use stressing about it now.

Thank you again and yes I actually am turning to my spirituality to help me through this. My friend did some beautiful womb meditations with me over the summer and they really helped! I want to also get a yoni steam and just generally connecting with my womb again better. None of the pain killers work for me and right now I don't feel ready for surgery so this feels like my only option. I'll let you know my finds :)

Much love and thank you again xx

1 like
Reply

You may also like...