12 months with an Endo diagnosis

I write a blog about running and often it spills into life stuff. Rather than repeat information I thought I would copy the relevant posts here to take you through my journey with endo so far. It's not short and I will probably rewrite it but I have found it incredibly useful to go back through this. In fact I may be the only person to benefit from this, LOL. So either get a cuppa or scroll on.

April 2012

I've had a pain in my side - hip/lower abdo for over a month now. It's not agony but enough that I'm always aware of it and when I bend down I bend my knees out rather than straight down, if that makes sense. I saw a doc who said it was in the region of ovaries or bowels... I was due a smear, she did an internal and all looked ok ??? I had an ultrasound last year and that was all clear.

I'm going to go back this week but the truth is I'm really worried about it. If my smear is okay I'll be so relieved. I just can't help going to a scary place in my mind. My life is so good and I'm so happy and the thought that it's something else scares the f*** out of me.

April 2012

Having paid the excess on my health insurance I'm grateful and feeling guilty that I can queue jump by going private. Much to my disappointment they can't do the scans, that *was* the point of the appointment.

So he checks me out and takes lots of blood tests for various things and to check for CA125 proteins (I think he said they are signs for a tumour?). Apparently I am swollen on one side and he wants to rule out a cyst, some chat about a telescope in my tummy (laparoscopy I assume). So scan on monday and follow up with him on weds night.

How much of an arse am I going to feel when everything comes back clear, that said I won't care :-)

So today I had my ultrasound. You know when you just know, you have a feeling? She did the abdominal scan and then asks if its okay to do the internal one. As I got changed i was thinking all sorts 'she must have seen something'. Such a contrast to the scans when I was pregnant. Anyway the Dr was lovely and bless her she kept her face impassive throughout.

She confirms there is a cyst and that we need to wait for the blood tests to come back and agree what course of action to take. She said it may go away but it's really rather sore.

In a way I'm relieved there's something so that it can get fixed but from a place of ignorance I can't help worry. I've looked up google but that's not really helping.

May 2012

Surgery to remove part or all of my left ovary. Suspected endometriosis but as my CA125 levels are elevated they will do a biopsy. Not a surprise but a wee shock too. If that makes sense.

Surgery brought forward to the 18th. 2 weeks today. Threw me off my game a wee bit I must confess. Good to get it over with.

Two is the number of ovaries I have this morning. So that's a result. I have stage 2/3 endometriosis. Lots was removed from my stomach and the cyst from the left ovary. It will most certainly come back but it's something I have had for years and all my reproductive bits look fine. My belly button is an abomination but I'm not going to look at it. A few other stitches and that's me. I'm sorer than I was post childbirth but mostly I'm relieved. Waiting on my meds and then being discharged.

June 2012

TOTM and it's as bad as ever if not worse so I am wondering WTF all this surgery was actually for. Here's hoping it settles down next time.

I think my last blog took us to the Consultant saying it was too soon to know *if* the surgery had helped, which sent me into a tailspin.. the pain got gradually worse (not writhing about the floor sore but constantly there sore). I tried to get an appt to see my GP but the reception desk would withstand guantanemo bay interrogation techniques I reckon and wouldn't budge. Saturday it gets really rather sore and I called NHS 24 because I am worrying what's going on in there. They send me to the out of hours doc, who god bless was lovely, very thorough and patient. Everything looked okay but my temp was up and she thought it might be an infection. Having had surgery she wanted to take no chances and gave me two loads of anti-b's and sleepy painkillers, with a warning that one tasted nasty and would get me very drunk if I had any booze and the painkillers would make me drowsy. Huzzah, a prescription to turn me into Father Jack (Father Ted). I have instructions to come back if it gets no better by morning.

It's no better Sunday morning and at 6pm when I am meant to be having a very rare and much needed night out with my OH he instead comes to the hospital for another out of hours appt while granny watches my son. Different Dr but equally lovely. He starts poking and prodding and checking my back and all sorts. His analysis is that there's 'a lot going on there'. Undoubtedly post operative pain/healing etc etc but he also reckons I have a trapped/impinged (same thing?) nerve which is what the pain in the side has been all about in the first place. He also thinks I may have an infection which isn't helping and says to stay on the drugs and to avoid sitting as much as possible. He suggests putting myself in a playpen to avoid being mauled by Boypie, lol. Another lovely Dr and very patient again, Mr Pie thinks that as the hospital are usually minor injuries he thinks Dr was glad for an 'interesting' case :-O I am feeling so many different things at this point I don't know what to think. In no particular order I feel:

* embarrassed - there is NO way I'd have gone if I'd thought for a second it was my back, I also feel like I am making a big thing out of this, perhaps I need to HTFU and just get on with it?

* upset - I've been through all this, when in fact the root cause isn't a bloody (pardon the pun) cyst or endometriosis

* fed up with the whole thing

If he's right then in a way it's a blessing in disguise as I now know I have endometriosis and if I hadn't found out now it could have been a lot worse.

So much poking and prodding and she thinks it could be several things but wants me to speak to my healthcare people and have an MRI. Something about hip misalignment and pelvic something (she wrote it down for me, I'd had cocodamol and was a bit spaced out

July 2012

Anyway, I thought it might help to get this down. Sitting here in my jammies when I should be on a bus going to work isn't helping but I don't really care. I think a large part of me feeling a bit bloo is TOTM and that it's no better if not worse than before. Last week my fatigue was unbelievable, the pain around my ovary at the start is quite bad, totally different from cramp and unexpected. I called the dr as we had dismissed this as post op last month... he;s in Spain and going to call me when he gets back apparently.

I'm waiting in results from a repeat CA-125 test as the consultant agrees that I shouldn't still have the pelvic pain. So it's just a case of getting to a good place with it all.

Back to the docs today about the MPP (mysterious pelvic pain). After a 30 min wait I was quite cross and had even started reading the leaflet about donating my body to science. Anyway once I saw her the GP was really good and took a very long time with me. God love the next patient who would have waited 60 mins :-O

Anyway, we're testing anything and everything. I found myself with several appointments made and a slip to go for a hip/lumber x-ray. Off I trooped to the Western and they had me in and out relatively quickly. Radiogrpaher didn't want to do the lumber (assuming that's my back) x-ray as he felt it was too much radiation. Fair enough. What do I know?

August 2012

Call from the Consultant today who offers me drugs to completely suppress my hormones for a few months, I ask if we're inducing menopause and it appears yes, that is what he means. This way we can see once and for all if it's a gyny problem. I think that it may have been a better face to face convo. Given it's through Spire I don't know why he's not keen to see me

Of all the possibilities I was playing with that was not one of them. I have moderate endometriosis. I can cope with the symptoms of that and I can cope with the pelvic pain if I have to. It's not knowing what it is and worrying that it's something else that bothers me. He's been dead keen to put me on the pill but I'm a bit unsure of that if it masks something else. Seems like we haven't got a bloody clue and we're chucking stuff at it. I totally get why I'd take the pill for the endometriosis but if there's pain all the time how's that going to help?

Sept 2012

I woke up feeling a bit blue. My ongoing health woes are leaving me with discomfort, bloating and feeling sluggish. I've not got back to form at all. Today is the Glasgow Half Marathon I pass a girl in an endometriosis uk vest. I wouldn't have given that a second glance last year. Someone else going through the same thing. I give her a thumbs up and carry on to pollok park.

Since we last spoke I took the jag to induce menopause for 12 weeks. I am now on HRT. 30-freaking-4 and it has come to this. As it turned out I was quite upset having the jag. There was some doubt as to whether the nurse was able to give it to me that day and I burst into tears and said she had to as I wasn't coming back. God bless her, she was so nice. She came over and said how sorry she was and how tiring all the investigations must have been and how disappointed I must be that the surgery didn't help. She was able to say what I hadn't really consciously thought but she was dead on the money.

Anyway - I waited for some sort of reaction. The mother of all hot flushes but nothing. I am a little more direct than usual but that's been quite amusing and frankly quite liberating. It might just be because I have kind of had it with everything and don't really give a shit. The pain hasn't improved but the doc said it gets worse for 2 weeks before it gets better so we'll see. It's not any worse

Running wise things are slowly starting to click into place. The pelvic pain in still there hanging about like a bad smell but I refuse to have my life dictated to me. If I can shift the weight I have gained I'll be happy - my clothes are slowly starting to loosen off (mostly running kit I must say).

Onwards and upwards and grateful for the ability to adapt, my body and my mindset.

October 2012

I'm near the end of my tether. A trip to see a different consultant as the GP thought there was merit in looking at my hips/pelvis/back to see if there are any biomechanical issues.

You know when you meet someone and from the off you just know it's not going to go well. He didn't introduce himself for one. His first words were ''so... endometriosis''. I'd hoped he would have looked at me first and then considered the endo. He had a wee shoogle of my hip (I mean like 20 sec worth of shoogle) and declared that there's nothing wrong with me biomechanically and the pain is likely nerve damage due to the endometriosis (it's the same side as I had the surgery). Now he's the expert but the doc I saw for post op pain/infection spent significantly longer looking at me and felt it might be my hip/back and my physio thought same. What do I know? If he'd been a little more rigorous I'd been happier even with the same diagnosis. Not really worth £175 was it?

Options were two drugs which he referred to by name only and their 'normal usage', I had to ask what they were being recommended to me for and what the side effects were. Choices being:

1) anti-depressants that block (inhibit) the pain from the nerve, side effect of being ''woosey''. well that's a lot of use when I have a job and child to look after

2) anti-convulsant that also inhibits the nerve pain and has same side effect

Can I take these on top of the zoladex and HRT, yes it would seem so. Marvellous. Which did I want he asked. None actually. I said I didn't know what to think. At this point I am near to tears, very near to tears. I asked how I was going to manage long term. I can't keep taking all these shite drugs. Not really his job to talk to me or give a rats ass tho is it.

I said the constant pain was draining and this had been going on a while. Apparently 7 months isn't actually that long. Apparently having had ongoing discomfort, surgery, drugs I don't want to take that are making f*** all difference isn't actually that bad. I don't think he could see what the fuss was about (not that I made one beyond being quiet and not really being able to answer his questions) or why I'd be reluctant to take more drugs.

He did fleeting say I could have an MRI on the back but he thought it was pointless, but at this point I felt so upset I just wanted out the room. My ability to deal with things isn't good right now. I had an uncomfortable moment of shakey voice and close to leaky eyes in a team meeting yesterday. Not good when 14 people are listening to you. I spent most of the team away day avoiding looking at people and most of today was 'eyes down'.

Anyway as the consultant prattled on he asked me which drug I wanted. I took the letter for my GP but don't think I'll ask for the prescription.

I know I'm not really ill, I know how lucky I am to have my little boy and relative good health but I barely made it to my car before bursting into tears. I just wanted to get away but as the rain was so bad and I was so upset I couldn't drive. After a while I was able to call my husband.

They don't really know what to do, I don't think. I don't know what to do. I don't like taking drugs and perhaps I'd be better having the pain from my disease than the ups and downs of taking meds and the side effects or lack of effect. He joked that pregnancy is meant to help and I could try that. How very f*cking practical of you, when infertility is a potential symptom - do I even have that option.. I don't know. Am I meant to keep popping kids out till I am at an age for a hysterectomy. It's not really the answer is it. Does he even get it. How would he cope with a swift kick in the baws several times a day? Made me appreciate my gyny guy. At least he's sympathetic and had the manners to introduce himself.

I must sound like a right moan. I know there are people that are really ill and this probably sounds over dramatic. It's not the severity of the discomfort but the frequency. It's so wearing, so very, very, very wearing.

Ran the Amsterdam marathon, slower than normal but I did it. Katypie 1 - Endo 0

Nov 2012

Not run since the weekend. Conscious of the way my immune system works and the fact that both men in my life have a cold and I'd rather I didn't. I had my MRI and I met the consultant on Wednesday. It's clear. Which is a massive relief. So I need to stop moaning and get on with it. It's *just* the endo.

December 2012

The 12 long weeks of treatment are over. It sometimes dulled the pain but it didn't take it away as predicted. The MRI shows there's nothing else going on. This is a good thing.

I don't know how long this medication stay in the system but I stopped taking HRT two weeks ago and frankly I'm not enjoying the reality of menopause. I'm hot, REALLY hot. Then I'm freezing. I wake up many times through the night with said temperature fluctuations. Apparently a dip in oestrogen makes you wee, a lot

Quite frankly the symptoms may be worse than the bloody disease.

Never mind. Time for me to take positive action and stop whining. Ive looked up lots about treating endometriosis through nutrition and once the festivities are over I'm going to take action

Very hard on the zoladex, my emotions are up and down. It's harder to deal with than the pelvic pain as it's so unpredictable. My HRT ends on my birthday and for three weeks over Christmas I struggle with menopausal symptoms and have one of the hardest times I've had since diagnosis.

Jan 2013 - Back on HRT

Feb 2013 - Period Starts, pain no better.

March 2013

half marathon - The familiar ache in my pelvis came into play and I found myself wishing I could someohow plant the idea in my husband's head to bring me cocodamol :( There were two stretches where I could get some pace up to make up for the slowing on the hill and cobbles but I knew if I went too fast I'd be sick. Tedious, tedious, tedious familiar symptoms but at least I now know what they are and to listen to them.

A few weeks later.... I can't honestly tell you why this was the run from hell except to say that somewhere along here it just went to shit. The familiar, frustrating pain in my pelvis and my head just being all over the place. Why am I taking time away from my family to do these long runs when I'm not training as well as I could

Since last week my side has been sore. The usual burrowing/gnawing pain and also some hip/groin/piriformis ??? pain that I think has been brought on by running through the pelvic pain and then starting to compensate through my running style/gait.

Suspected kidney infection/endo pain? The endo came up in the chat and the Dr wants to know if I am sure it's not that. I really do wish that it didn't feature so predominantly in life. I know the conversations could be so much worse, as could the illness. I still resent it very much.

So, christ knows what's wrong with me. I feel much better if not a little washed out. Should I be off tomorrow or back in to the grind? I don't know. I'll see what the morning brings.

April 2013 - I pull out of a marathon one week before the race

Literally, things are stuck and need unstuck (Ovary embedded in bowel wall). Surgery is needed. As is a decision as to what level of surgery I have (laparoscopy or that + ovary removal). The end result is inevitable but it's about delaying things as long as possible and giving me choices.

Not been the best 24 hours I have to say.

At least I know why I am so sore and there can't really be any doubt that my current injury/pain/inability to walk properly is because I have tried for too long to grit my teeth and have in some way compensated for it and that has come home to roost in the last few long runs. It wasn't the cold weather, or the fact that I am 'weak', my insides are just a bit f**ed up. For the first time I left the consultants without feeling upset. Actually I think my Dr is pretty good, he is a nice man and has the luxury of being able to spend as much time as is needed to talk to me. He's doing his best for me, not sure I saw that before. We have to work together and get on the same page

I had a tiny wee greet on Wednesday after my 'run' when I realised that there was no chance of running but on the whole I feel numb. I was walking down the street telling myself that I had a stupid body, telling it off like a child.

The fact that now there will be a prolonged period of recovery feels to me that it effectively sets me back to zero. Again. Two years of revised plans and missed goals.

April 17th

At 11.55 the nurse came in to say my surgery was brought forward two hours and how quickly could I get changed. Lol. Freaked me out a wee bit but at least it was going to be over.

I came round a million times better than last time. I was about 2 hours in surgery tho. I have four incisions this time and am minus an ovary.

Having just seen the consultant I am relieved to know I made the absolute right decision. The ovary was stuck to the bladder wall and as he tried to remove it he found lots of endometriosis. How I ran and trained through that I don't know.

I feel good. We are confident this is it. I'm on the road to recovery

What I hadn't said in my blogs was how much I want a second child, how hard it was to say to to remove the ovary. How grateful I am to have my son. We'd been half heartedly trying for another and still have the option with me having one disease free ovary.

I'm not thinking about what's happened. Refusing to be sad about losing the ovary, I know I'll be upset but right now I am trying to get better. Taking it a day at a time.

6 Replies

  • What a refreshing read!! Not that you have suffered so, but the way you put it all, swear words and all, they made me smile (sorry). You really have been through so very much, I don't know how you have carried on with that pain, and, I sincerely hope your op is the answer to your problems and that you are soon on the mend, and ready to conceive.

    I just wanted to empathise with you for having constant, incessant pain, mine is my lower back and is like period/labour pain, and has made it's presence known every day now for 6 months. I have had Diagnostic Lap/scans/lumbar spine xray/seen a Specialist Clinical Nurse at a back pain Clinic (who agrees with me my pain may well be Endo related as there is nothing physically wrong with my back). Despite being told the other day I have Endo on my uterosacral ligaments (they kind of hold the womb in place), Gynae is still trying to say there is something wrong with my back. May be having an MRI. Fingers and everything crossed we get to the bottom of it soon as I can't go on much longer suffering this debilitating pain (I am almost bed ridden as can't sit/stand or walk for long.

    The other thing, I just wanted to reassure you, I am sure I have read that when you have one ovary removed, the other one kind of "picks up and takes over" therefore producing the same amount of eggs as if you had two ovaries. Soooo, good luck there with the TTC and wishing you all the very best after your horrendous journey. Much love xxx

  • Thanks Amb43, I hadn't realised how much I swear! I find it good to talk to the disease and stick my fingers up to it. Not sure it's productive bbut it makes me feel better.

    I hope you get the MRI and it gives the answers you need to get the Dr's to make a decision on your treatment. I wish you well and hope you get some resolution.

    My consultant thinks that we should be able to conceive and given I have a child already it's nothing short of a miracle. Almost feels greedy to want more. I did laugh at a comment from a friend who was trying to look on the bright side and said (sincerely) "at least you'll only get a period every other month''.. :-)


  • all the love in the world to you! so strong to keep running with all that i have to work myself up to takle the stairs lol! its amazing the strength you have and all the other woman on this site dont ever think your alone or being stupid or winging because we understand i dont know where i would be if i didnt have the woman on hear to help me you all should get medals all my love and lots of tummy love to you i hope things ease up for you xxx

  • I'm just a stubborn old moo who refuses to give up. That said I'm now injured trying to run through it all so that wasn't a very wise decision. ;-) It makes a world of a difference knowing I'm not alone which is why I decided to post my blog. If I can help one person feel less isolated/scared then that is a good thing. x

  • Hi katypie, wondering how you are and how is the pain nowadays. Hugs xxx

  • Hi, I'm sorry I have only just seen your comment! I am okay thanks. Recovery has taken far longer than i expected. Off work for 4 weeks and I am still a bit round (that could be weight, lol). I do still get pain, I have been hoping it's post operative but I'm really not sure it is. I'm running again though (well, I've started to) and that is always good for body and soul. I ran up a mahoosive hill on sunday and when I got to the top I turned and told the world 'screw you endo, you will not beat me and you will not define me'. Silly? Yes. But it felt damn good. I hope you are well/.

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