5 months on...

[gld87]

5 months ago my GP mentioned Endometriosis to me. A few days later my period arrived and the agony continued. That sparked my first post in this forum. But I'm now at a stage with this illness where I'm feeling isolated. No one around me gets it. They ask 'What kind of pain?', 'How are you feeling?', 'Better today?' and I never know to to answer them, because I know they don't get it. I feel like I need a support network, and I'm hoping this forum can be that, as I'm feeling a little out of my depth with my own life at the moment.

Since my first post...

In April my GP referred me for an ultrasound. Results showed two ovarian cysts and areas of inflammation, which was noted as possible endometriosis. General plan for this was to rescan in 3 months time, which I wasn't too keen about. I went back to my GP an talked about 'next steps'. By this point I'd also spoken to my Auntie and my Cousin, both had suffered with ovarian cysts in the past. I said to my GP that I was worried, and the this could be hereditary, and that the research I'd done since the scan was pointing me in the direction of endometriosis. All the symptoms were there, and I was scared. I got quite upset and she said she'd refer me to my local specialist. Naturally, I Googled him and was pleased to see be was a endo specialist and adopted the 'cutting out' not 'burning off' method of removal.

Referral paperwork arrived and there was an indefinite wait - not even a guide on there for when an appointment would come though (that's what happens with you have an Endometriosis Centre on your doorstep!!). At this stage my Mum was concerned about fertility (only child and all, I'm her only source of grandchild!) and she kindly paid for a private consultation, with the view of then going on to my consultants NHS service.

I had my appointment with my consultant on 23 May. An examination was conducted and he confirmed there and then that it was endometriosis I was suffering with. This confirmation filled me with relief and fear all at the same time. It confirmed that I wasn't over exaggerating. It wasn't all in my head after all. But I knew there was a long journey ahead. He advised that a laparoscopy would be the next step, but due to a previously diagnosed blood condition, he wanted to consult haematology first.

Last Thursday I received an outpatient cancellation letter from the hospital - advising that an appointment on 13 July was cancelled. An appointment I wasn't even aware of. I called his secretary and explained that I needed the appointment, and the reason it was probably cancelled was because they needed blood test results back before the appointment. I advised a blood test had been done, and they were with haematology. She came back to me later that say and confirmed the appointment was still in place. Crisis adverted!

Meanwhile, on that Thursday I'd had to call in sick to work. I was 4 days in to my period and I was in agony. Naproxen and Solpadol weren't helping and I couldn't do it any longer. I needed to up my dosage, which would result in my not being able to drive to work. My boss was understanding, but this was hardly ideal as I was only 2 weeks in to a new job.

In addition, I'd actually need bleeding for a week and a half. Apparently my body now bleeds after intercourse, which is another complication to add to the ever widening mix.

Thursday evening my pain took a turn for the worse, which resulted in a 4 day hospital stay. My cyst/s ruptured. I've never felt pain like it. It was different to the other pain. More wide spread. More intense. Very different. Thankfully I live with me Mum, so she called 999 and I was carted off to A&E. I waited, examinations were done and they admitted me to get the pain under control and confirm what was happening.

Friday morning I had an internal ultrasound and a cyst rupture was confirmed. They were able to confirm that the ovary blood supply was intact, but the inflammation and fluid were obstructing things. My infection and inflammatory markers in my bloods were spiking and my temperature was up and down so they kept me in, but I was terrified. This was even more of the unknown. And all I kept thinking of was 'is my ovary okay'. In addition to this the pain continued and I spent 3 solid days on morphine, which caused me bowel problems. Thankfully the first few days I was off food, but as soon as my appetite returned I knew I needed to eat. I needed to get my bowel working. 5 days on and it's still not back to normal. I'm embracing the lactulose and hoping it'll sort itself out.

I was discharged yesterday, but am feeling fragile. Even more so when I'm unsure if both cysts ruptured or not. I literally rolled over in bed and that caused the rupture, so it's left me a little afraid to do anything...not that I plan to at the moment, but can I run again, or am I really that fragile?

This morning I woke up with a migraine (not had one of those for a while - I suffered with them a lot when I was on the combined pill) and tonsillitis. I had my tonsils removed in 2011, and yet I've had tonsillitis twice in the last 3 months - both times 4/5 days after my period stops. Is this normal? I've seen things linking endo to the lymphatic system, but I'm yet to get my head around that one.

I had to admit, I'm reading a lot about endo, and I'm feel so out of my depth. I have all these drugs to take, which then cause other problems that I then have to take remedies for. I'm constantly thinking "Jesus, what's my next period going to be like?" and planning my life around it. In addition to all of that I'm feeling utterly shit about myself. I'm bloated and uncomfortable and feel unable to do anything - either because of fear, exhaustion or pain. What I'd give to have the energy and confidence to go to the gym for an hour and cycle away my worries. I just feel terrible.

I have a stack of endo related books my my bed. 'Living Well with Endometriosis', 'Period Repair Manual: Natural Treatment for Better Hormones' and 'Endometriosis: A key to healing and fertility through nutrition'. All advising of different things to make life a little bit better. Since last week I've removed dairy and gluten from my diet and I really need to get my head around natural anti-inflammatory boosters. After that I need to raise the whole 'On the pill, off the pill' debate with my consultant.

There's just so many questions, and routes and things to learn. I feel like I'm back at school again. But this time I'm learning for me, and it's exhausting. Does anyone else just feel out of their depth sometimes? I often wonder if any of these lifestyle changes I'm implementing will help, or if they are just distracting me from the wider problem.

[jollywagtails]

Hi there. I'm so sorry to hear you are feeling so awful and out of your depth. Endometriosis is extremely painful, downright excruciating and you are right that not many understand it.

I have lived with Endo for 8 years now. It took about five years to diagnose, as is often the case. I was also told I had ovarian cysts which turned out to be fibroids. Sounds like yours really were since you had a rupture. I really only get the bad pain when I have a period and it is really awful. You don't say where your pain is. Mine upsets my bowel and radiates through the pelvic region. For me: Warm baths help with mild pain; 2 strong paracetamol and 2 strong ibuprofen every 4-5 hours when pain is really bad. I have been offered addictive drugs many times - like oxycontin, but only take one if in agony. I do not want a new problem! I'm trying to be healthy & natural with this - not become a synthetic drug addict!

Hot water bottle, fresh ginger tea, drink a couple of litres of fresh room temp or warm water a day. I use an enema kit with fresh boiled water if pain affects rectal area and bowels. Read up on enemas on google. I have found them to be a life saver at times. They have certainly kept me out of hospital! When feeling better - yoga is great for me and helps me not to stress when the pain is bad. Stress definitely exacerbates the pain. I love Susan Fulton and the breathing techniques she espouses. I find yoga helps me now in my every day life.

Melissa Turner at endoempowered.com also makes me happy. I'm currently doing her short very cheap course.

I hate the endo of course, but it has made me grow in many ways. I think more about how I treat my body these days and what I put into it. I'm not fanatical about food because you have to enjoy life, but bingeing is long gone now. I have just learned to view food differently. I always had a sweet tooth so satisfy that with occassional 'Bliss balls' which I make myself (lots of recipes on line and then experiment yourself.) I just made some with walnuts, ginger, goji berries, cold-pressed organic honey, tahini, rolled in flaxseed, then pure cacao powder. Delicious! Or dark chocolate balls with slivered almonds or cashews and a bit of orange liqueur. Very yummy! It is fun experimenting with whole foods and you can make some really delicious foods.

I've learnt to make my own bread and have fun experimenting with fruit and nuts, olives, sea salt & rosemary etc. Everyone around you will love your new recipes! I try to eat only whole foods only, no processed foods, no bleached foods, no unnatural sweetners, corn syrups etc. Definitely no junk food! Have you read those labels?! Make your own - pop corn, and foods I've already mentioned. Eat sensibly and enjoy food. I think food is a big thing. It has definitely helped me become much healthier and stronger. I haven't given up milk but hardly have any really. I have oats in the morning with Almond milk now and LSA and a little brown sugar. Sometimes I have my homemade fruit/nut toast in the morning with a little butter, which has wheatgerm and flaxseed and good things like that in it. White bread has gone, but I still eat whole grains & rye. Between food and yoga I've improved the quality of my life a lot and have controlled the endo pain considerably.

If you smoke ciggies, give it up! Remove all toxins from your life. Go as natural as you can.

Overall if you make several small 'fun' changes, you will feel healthier and stronger in the longer run. I'm due for another laparoscopy in 12 days. I know my specialist will probably talk me into a hysterectomy again, but I won't do it - yet. I don't mind foreign bodies taken from me, but not parts of me. I have read alot on endo and know that a hysterctomy will not necessarily cure me anyway.

I've read alot about what others say who have lived with this disease. There is no 'cure'. Doctors don't seem to know a great deal about it. They certainly don't have all the answers in my experience. I have had 3 myomectomy's (full cut across abdomen) for fibroid and so called ovarian cyst removal that were just more fibroids. I have recently read that these sorts of operations can exacerbate endometriosis scarring and lead to more.

I know the terrible pain you feel!! It can ruin your life sometimes it seems! You will find out who your real friends are in the long run and maybe like me end up running your own business because you can commit to full time work for anyone else. I am lucky to have a wonderful partner who isn't the best at looking after me but I've learned that if I ask for what I want in a nice way, he will happily go and get it! People aren't mind readers. You will have to communicate really well with this disease. Others will feel helpless, not knowing how to help. Tell them how they can help and then show lots of gratitude to them. You will learn with this pain how to become a better person all round! It really does teach you if you let it and learn about it.

Go within and take control of your own life. Feel empowered by this disease and how it will change your way of thinking for the better. While you are in terrible pain, you will not feel empowered, but later I'm talking about - when the pain subsides. While you are in pain , take this time to relax and look after yourself well. Warm baths, lots of good movies and books, write in a journal. Do what you need to do for you. Ask for what you need, communicate to those you love how you feel. They will get it eventually. I hope you are feeling better soon. Remember 'this too will pass.' One day soon you'll feel like your old self but even better!

[gld87 in reply to jollywagtails]

Thank you so much for such a lovely, upbeat, and positive reply! You certainly seem to be converting crappy endo on to a positive in your life, rather than letter it get you down