Some of my experience of living with endometriosis.

[TitianRed321]

Hi

I want to share with you with you some of my ongoing experience of endometriosis as I feel that you heroic people who struggle with endometriosis everyday, or love/care for someone with this condition, etc, will understand what I am going through more than those who don't have this devastating/debilitating condition, or love/care for someone with this condition, etc. Likewise, I hope this post will help other sufferers to know that there are people out there who can empathise with how you are feeling and what you are going through.

I am 40 years old. I am struggling on a daily basis with the severity and unpredictability of the pain of endometriosis and associated symptoms. I want to feel as good as I did 10 years ago, when I was able to have a relatively normal working life/social life, was able to participate in relatively high intensity exercise and had energy, and still had the hope that I might one day have children. Roll on 10 years and I feel truly awful most of the time - I have chronic fatigue everyday, along with pelvic pain, abdominal pain, hip pain, leg pain, strong feels of nausea and headaches. My abdomen is bloated all of the time now so I now feel I look 5 months pregnant most of the time which is particularly cruel when I've been told by the Consultant at the local hospital that it is highly unlikely I will ever be able to have children of my own. I have unpredictable and excruciating abdominal/pelvic pain and severe stabbing pain deep in the bowel just prior to, and sometimes during, opening my bowels. I very often cannot fully empty my bowels. My appetite has lessened at times as I feel uncomfortable with the bloating and bowel symptoms. I have started getting urinary symptoms in terms of needing to go more frequently and the urge to go has got stronger. I was diagnosed with depression/anxiety at the beginning of the year due, in part, to the endometriosis/associated symptoms. After trying for a baby for a number of years, I was finally told by the Consultant at my local hospital that it was highly unlikely my husband and I would ever be able to have children. We are not eligible for NHS funded IVF treatment as my husband has a child from a previous relationship. My Consultant at the local hospital told me that I am '...one of the unlucky ones...' in that the endometriosis, etc, returns very quickly (6 months after my second operation, the symptoms had already returned and worse than before). My CA125 was extremely high.

To give you some idea of the unpredictability of the pain, I give you the following example - Despite having had some sharp stabbing pains in my abdomen overnight, I woke up this morning feeling relatively ok and in quite good spirits. However, an hour later I was doubled up in excruciating pain prior to trying to open my bowels. Unfortunately, I was unable to fully empty my bowels and this pattern continued another two times involving me rushing to the toilet doubled-over in pain. I am even finding it uncomfortable to sit down. After the third episode of this excruciating pain in 30 minutes, I burst into tears. My wonderful husband and I talked about how to manage the pain, but the challenge is the total unpredictability of the pain which can change on an hourly basis, if not more often. I can go from slight discomfort to excruciating pain in a matter of minutes. The pain is more often generally worse at night and in the morning. I think the fact that I am on my period has also made my bowel symptoms even worse.

This condition is devastating, as most of you will know. I am about to go through my first warning at work due to time off work for an operation for endometriosis and other gynae problems, bowel problems, and depression/anxiety which has, in part, been caused by the endometriosis/associated symptoms and the impact it is having on my work/social life. I am extremely worried that I will eventually lose my job because of this condition - if that happens, it is likely that my husband and I may lose our home.

There seems to be a hierachy of moral support at work according to your illness - those with heart problems and those whose symptoms you can see are treated with heaps of moral support. I feel like 'invisible' illnesses don't even register so I feel extremely isolated at work.

I have extremely little in the way of a social life now. I cannot pre-plan anything as I do not know what I will feel like on the day and I have lost lot a fair amount of money from non-refundable social events that I was booked on and then was unable to attend. I now don't pre-book anything. In addition, the bowel/urinary symptoms mean that sometimes I need to get to a toilet urgently and more frequently than I used to so I have stopped going to the cinema, etc. I have also stopped going on countryside walks, which I absolutely loved to do, in part due to the lack of toilets! My periods are very heavy - taking tranexamic acid helps a little, but I still have to use the highest absorbency tampons there are combined with night time towels - and hope that no disaster happens... I have also started experiencing pain when using a tampon.

I have been on the waiting list at my local hospital for 3 months for another operation for endometriosis, etc. (This will be my third operation for endometriosis/other gynae problems). Upon learning about BSGE centres, I asked my GP for a referral to our local BSGE centre which he kindly did. I have now been to see the BSGE Consultant at the centre who was very good. I think the BSGE Consultant was trying not to express his shock at the fact that I was not given an MRI scan at my local hospital or any fertility drugs, etc. I have 'kissing ovaries'. I have problems with both ovaries, but apparently my right ovary is a lot bigger than my left and there is endometrioma on it. Anyway, the BSGE Consultant has put me forward for an MRI scan and put me on the waiting list for the operation that I need - however, I do go to the back of the queue again and the waiting list at the BSGE centre is 3 weeks longer than my local hospital.

[Tboag]

Your story sounds very familiar, only im blessed with children,

I'm so pleased to hear you are now under a bsge centre, hopefully a thorough excision job will help you with your pain,

I'm also on the waiting list with bsge centre fir a laporoscopy, after having one last March with gyne dept, and a hysterectomy for ADENOMYOSIS in July,

I know the wait is hard, but atleast we are in the right que now

I wish you every success with your operation,

Fingers crossed for a pain free furture, please keep us informed x

[TitianRed321 in reply to Tboag]

Thank you so much for your kind reply. It is a comfort to know that there are people such as yourself that understand how I feel, although I wish that no-one had to endure the challenges that we and fellow sufferers have been through and continue to go through.

I'm glad you are on the waiting list at a BCGE Centre too. I wish you every success with your op too.

I will keep you informed. X

[JeanOsborne]

Hi , your story sounds so similar to mine. I'm now nearly 43 and had a TAH, BSO and excision at a BSGE centre in March.my story starts when I was just a child.

I started my periods when I was only 8 years old. I don't actually remember what they were like at that age but by 15 I was rolling round the floor screaming in agony only to be told it's just normal for you, or it can't be that bad or made to feel like I was making it up.

By 16 I had out myself on the pill which helped slightly. Over the years I was once told to get pregnant and that that would solve my problems another time I was actually advised to kill myself. Believe me there were times I felt like it.

In my late twenties I discovered the depo provera injection. Wow! This was amazing . Had three wonderful years with no pain and no periods. Was told I couldn't stay on it any longer and changed to implant.

This was when everything started to go wrong again

Periods came back but really messed up. Could be bleeding for anything from 2 days to six weeks then have a weeks with no bleeding and then start again. Or I could go several months with nothing.

Meanwhile I had met Chris and had got married. Due to the issues with implant and that we decided ttc, had it removed.

2014 went for routine smear and mentioned we had been ttc for 4 years . Nurse spoke to GP who arranged ultrasound.

Within a hour of smear test I started bleeding(this continued everyday until diagnostic lap). Had ultrasound in the October which showed a 6cm endometrioma. This is where I struck gold. I was automatically referred to a BSGE centre, to a wonderful consultant. I first saw him in January 2015 where he said he highly suspected endo. This was the first time I had heard of it and also the first time someone listened and believed me.

Had lap in July, where endometrioma had grown to 11cm , I had a tear in vagina(from having the smear) and the endometrioma was drained as a temp measure as he knew I needed further more extensive surgery. He also suspected adenomyosis.Hence the hysterectomy.

My consultant actually phoned me from India the day I came home from hospital to make sure I was ok

I've seen him twice since March. The last time I gave him a big hug as he's changed my life. For the first time I feel great despite of health issues that are unrelated.

I'm glad you're finally at a centre and I really hope your consultant can help you the way mine has helped me.

I wish you all the luck in the world.

[TitianRed321 in reply to JeanOsborne]

Thank you for your kind reply.

I can identify with people trying to make me feel like I am making it up or that it can't be as bad as I'm saying it is. Indeed, last year, a very unpleasant Occupational Health nurse told me I had nothing wrong with me after I had just been through my second operation!

I, too, was advised to go and get pregnant by my GP at the time. I was in my twenties at the time. I felt this was highly irresponsible information to give out as I wasn't in a relationship at the time. I was given this advice as a 'cure' for cyclical migraines that I used to get.

I am horrified to read that you were even advised to kill yourself.

You have been through so much.

I felt it really lifted me for a time emotionally when a sonographer that I saw late last year finally acknowledged how much pain I am in simply from looking at my ultrasound.

I am really happy to read of the positive experience and outcome you have had with the BSGE centre you went to; I feel very encouraged by it! X

[Wind_mill]

I have very similar bowel symptoms to you in not feeling like I can empty my bowel. After 3 months off work after my most recent op, and 2 months of phased return, there are days that I wonder how long I can keep full time work up and I'm only 29! I got to a point 6 months post op where I had excruciating pain relating to trying to open my bowels - I either felt like I was going to pass out or throw up! My consultant has been really good, however thinks the pain is to do with my nerves waking up after 6 months and a combination of scar tissue from my first op where a surgeon accidentally went into my bowel or Endo in the bowel. I was devastated to learn this 6 months later after 9 hours of surgery and such a lengthy recovery. I have therefore turned to a nutritionist and it is the best thing I ever did. The pain is Sooo much better, I open my bowels daily and I am so much less bloated. I take a lot of supplements and have cut a lot out of my diet but I'm happy to give them up if it allows me to go to the toilet on a day to day basis and to have more of a life!! The pain is still there a bit before and during my period but not like it was before. It looks like at some point I may need further surgery but it would be very risky therefore I'm trying to do everything else first. While my recent surgery has saved my kidney, neither of my surgeries have helped with my bowel symptoms which has always been my main concern day to day, therefore I don't see surgery has really benefitted me day to day and won't be rushing to have another.

[TitianRed321 in reply to Wind_mill]

Thank you for your reply.

I am sorry to read of all that you have been through.

I have dropped a few hours a week at work due to the endometriosis and symptoms associated with it. I am just about to have my first attendance meeting at work due to the amount of time I've had off work from endometriosis.

I can totally empathise with your feeling that you were either going to pass out or throw up due to the pain of trying to open the bowels. It had crossed my mind that perhaps the pain I have been experiencing is related to the nerves.

I'm glad that seeing a nutritionist was beneficial to you; it sounds like it was a positive experience. I'm going to look into seeing a nutritionist too

[Marcia71]

Sorry to hear of all your troubles and the more I hear the more I know we're not alone!

I so get your point about invisible diseases - my boss told me last year "I looked OK, so I must be ok"!!! I've now just been made redundant and they cleverly did it via a restructure of my team. That said I was off sick with endo pain at the time so informed by solicitor that's it's disability discrimination. It was my occupational health adviser (seen via work) who wrote a report stating time off sick with endo is covered by the disability act and should be recorded as such. I'm sure that this means you can't be disadvantaged in any way at work if you were only attending appointments of off sick in relation to endometriosis. Clearly my Occ health sound more on the ball than yours (or just more sympathetic) but could be worth asking them specifically if you are covered under the disability legalisation and equalities act.

I'm stuck now on gardening leave and trying to sort out my pain so that I can find another job. But unsure how much I'll ever be able to do. On the plus side I've been paid for a few months so do have a bit of leeway to sort myself out but rather scary times.

Take care all.

[moxyfilms]

I'm so sorry. I can relate to so much of your story. I am feeling horrible today and I can't do anything but send you huge hugs and tell you I hear you, and I wish you all the help and support you need xx

[attummi1973]

I know exactly how you feel ,been ttc for 5 years only diagnosed oct 2014,after i had an ovarian cyst rupture and needed emergency surgery.im 43 and feel cheated by endo...finally being referred to a bsge centre, and have an appointment in july...good to know there are others out there in the same boat, hope you get sorted out soon...fingers crossed for all of us,

big hugs to you,angela.

[Wwithendo]

I completely understand what you have been going through as your life mimics mine. I have almost all of the same physiological and psychological symptoms as you. Endo has ruined my married life and my career path. I feel quite alone in dealing with this disease. No one really understands the day to day struggles. I'm 47 now and have asked my gyno to fully remove my Endo before I get a hysterectomy. It too keeps coming back every 6-8 months. I want my life back!!