Peace of Mind, the journey so far ;-)

[Pixiemus]

HAPPY FRIDAY Everyone  

I have written on here a few times before and have had some amazingly helpful replies which have been so appreciative and reassuring, thank you ladies! - which brings me to posting this little (or not so little) note. 

Truthfully I am really not sure where to start without sound like a broken record as it seems so many of us sadly go through this ;( I want to remain positive and hope this post will bring some attention to the way that us ladies have to cope with the endless waiting for answers. Maybe this post is something of an endo "dumping" which I wouldn't normally do as I don't like to off load onto others who are equally experiencing their own struggles, however I strongly believe that it is important that people understand the perils that we have to endure to get peace of mind and a better quality of life.

First and foremost I totally support the people working within the NHS for with their tireless amazing work. Having family members working in the system as well as being a patient provides 2 perspectives, which is no doubt the same for many others out there. The work that they do is incredible and I have so much respect!

I guess that this post is basically fluttering around the process of being diagnosed through to treatment. It all started for me around the age of 15/16 with horrendous abdominal flare up's that would happen without any reason. I had the usual going back and forth between consultants and departments trying to figure out what was happening and more importantly WHY! So at the age of 18 I had a lap which supposedly didn't show anything but then I never had a follow up appointment, which was obsessively chased by my mother at the time! (and only recently found out that there are notes associated with this surgery!) It was left to the GP to say that nothing was found and that's that... 

So then come the university years where it became a battle of the daily grind balancing uni work with all the bombardment of pain and many other (which I know now to be endo) symptoms. I was referred to the Radcliffe Gastro team in Oxford and had the all singing and dancing diets, tests & investigations to determine what was happening (still no mention of gynae at this point) - all tests = NEGATIVE for the usual band of gastro issues, they did discover I was mal-absorbing through an undiagnosed B12 deficiency and that fibre had the adverse affect on my bowels, but couldn't find the route of the flare up's & huge range of other symptoms. So I was somewhat cast into the umbrella of IBS and would be monitored accordingly. Changing my diet to investigate if food aggravated my symptoms had no impact so back to square one - no explanation for what was happening to my insides and no reassurance for my peace of mind. 

I have spent the last ten years since leaving university heavily researching bowel disorders and of course endo as there has been no improvement with my general health - now entering the bracket of chronic pelvic pain. During this time I have been determined to keep working and maintain some sort of "normal" life with a stubborn attitude to not let the niggles take over, the result of this was exhaustion at the weekends and evenings with fighting the pain. I commend all those who suffer with chronic pain - for me over the years it has become more about strength of mind to keep fighting it. Those close to me can now easily tell if I am having an "off" day by the look in my eyes. 

Anyway with all the reading I was becoming more convinced that something more was going on and IBS was NOT the route of all problems. I have lost count of how many times I have said to the doc's that something more is happening - not once did they refer me to a gynae consultant until last March when I had experienced some seriously nasty flare up's and the daily niggles were now a constant. I should explain that my periods have always been very light, always had pain on the first day and always had nauseousness during ovulation. However this was changing in 2014 where I experienced pretty much all the symptoms associated with endo, my periods became excruciating painful with the pain lasting the entire time, the leg pains/discomfort began, sharp & dull pains began deep in the pelvis and constant back pain just below ribs, endless cystitis and so on. Sex has always been painful but the pain was now becoming very deep, so off I toddle to the docs once again.  

I AGAIN recited the last 15-16 years worth (oooh that's scary) of issues. Finally it felt like someone was paying attention and there was an UNDERSTANDING that this is not just IBS. An ultra sound was all booked for June 2015 and couldn't wait to get finally get some answers. The scan revealed an 6cm complex cyst on my left ovary which led to receiving a phone-call from the doc's explaining that it had cystic qualities that could be cancerous and would be put on the rapid access route to see a consultant. I was seen within 2 weeks of the results by a Gynea Oncologist who ordered an MRI to investigate further. At this point the only visible oddity was the complex cyst with septations and peripheral vascularity (it's own blood supply) on the left ovary. Blood tests showed a normal CA-125 result so I was referred to general gynae. The MRI happened in July. 

It is at this point where the frustration might start to show through my words and I hope that what you read from this point will highlight the unacceptable treatment of patients in chronic pain who endure the onslaught of symptoms created by endo. There are many women out there suffering so much than I am and I send you all huge respect for taking each day as it comes. 

From July 2015 I didn't receive any information regarding the findings of the MRI and did not receive a follow up appointment until OCTOBER 2015! There was continual chasing only to be told that "the report hadn't been received" to "yes it has been received and is in the consultants tray" to  "the consultant is covering 2 other consultants work load so there is a very long appointment back log!" 

So still no answers and my peace of mind is struggling to stay afloat! Still no pain relief! 

OCTOBER 2015: Finally get to see the consultant to be told that they suspect widespread severe endo on bladder, kidneys, ureters and endometrioma on left ovary. I must say that the consultant was fantastic and listened intently to my story, even suggesting that the first lap I had 14 years ago probably missed the early stages of endo. So a laparoscopy is on the table for a complex procedure and I left feeling chuffed knowing that there is something going on other than IBS and I am not making it all up! I left the hospital holding a leaflet on endo and living with it, ha! Slightly ironic! The pain relief at this stage was tri-cycling the pill to reduce the inflammation and mefenamic acid. 

So Christmas passes by and still no news on a date for the lap and the pain is becoming unmanageable and exhausting! Still no news by end of January so my GP wrote to the consultant explaining that my symptoms and pain has become difficult to manage, could they advise on what treatment to try next and could I come in for an appointment. No appointment was offered, instead a letter was received offering a new treatment = Welcome Prostap and the chemically induced menopause such fun! I was embarking upon a treatment that I know nothing about and neither did my GP! At this point my brain has gone into overdrive with so many questions - why has no-one considered how I am coping day to day.....? Why didn't the GP/consultant refer me to a pain clinic?! The received answer was that pain is complex and it's best to wait to see what surgery finds!!!!! pfffft! 

By mid February under the advice of my GP, I am calling the consultants secretary weekly as time is ticking on and I am getting married in May - eeeep, I was seriously asking myself should I be considering cancelling the wedding.......? FINALLY a date is offered over the phone for the 10th March!! PHEW  

2 weeks before surgery the Junior Doc's release their strike dates - Yes that's right my surgery falls on the date of the strike!!!!!!!! So it's all up in the air, more chasing is required to establish if it's going ahead - two days before I get told that it is, yippppppeeeeeeeeeeeeeeeee!!!! Now for bowel prep! So the day arrives and the excitement of getting some answers and being pain free is finally kicking in Before going in I get offered the mirena coil by the consultants assistant, this was 30 mins before going into theatre......with no explanation as to what it does, the benefits, side effects, so I was totally bamboozled by this! I explained that this was never discussed by the consultant and I had already started with PROSTAP under their advice! So it was agreed that I would continue with this. 

Post SURGERY = wasn't seen by the consultant but instead a member of the team who explained that the consultant is best placed to run through what was done and what was found - so I leave hospital knowing absolutely nothing other than what it is written on my discharge notes "excision of 2 left endometriotic ovarian cysts with bi-lateral uterolysis, fixed and retrovered uterus and excision of endometrial deposits in the uterovesical peritonetium......" 6 weeks off work and a follow up appointment in 6 weeks. 

So sorry this is massively long winded!!!!!! Now to present day and 3 weeks post surgery  = no appointment letter received, so I decide to phone the consultants secretary. I explained I am waiting for a 6 week appointment post surgery only to be told the consultant is not available until JULY!!!!!!!!! but there might be a possibility of the end of May, 3 days before my wedding! I am now totally lost for words........

MORE WAITING AND NO ANSWERS! My peace of mind is shattered! I am utterly disappointed with the process that we have to go through to get treated and finally get onto a path which allows us to live a pain free life. I am saddened to know that I am not alone and many other women have too ventured on this horrible journey. 

What can be done to reduce the time that it takes to get diagnosed and treated......?????????! This simply cannot continue!!

I am amazed at the resilience of the women on this forum and hope that by openly speaking about our experiences the medical profession will take note of the perils we face and eventually provide more positive experiences during the process of being diagnosed and treated

Thank you for listening

Much love, faye x x

[JeanOsborne]

Hi I totally agree with you. It took me 30 years to finally get a diagnosis. By which time the endo had done so much damage that I had a total abdominal hysterectomy with removal of both tubes and ovaries along with excision on 3rd March with an amazing surgeon. Finally feel like I'm getting a life back even if it is slowly. How are you feeling now after surgery?

[Pixiemus in reply to JeanOsborne]

Hi jean

Wow 30 years, I am so sorry that you have had to endure it for such a long time and its great hear that now finally after all this time you are on the road to recovery! How are you feeling post op....?! I'm doing ok thank you, had a slight niggle with a urine infection, still have some other niggles like the leg/nerve discomfort down the inner thighs, which I had before the op...its quite hard to tell if surgery has been a total success as the prostap will act as a mask until the cycles start again, so fingers crossed until then. Wishing you all the best with your recovery x x

[JeanOsborne in reply to Pixiemus]

Hi I'm not too bad . Still having a lot of issues with bowel and bladder, but it will take a while for things to settle down due to healing. You might find it takes up to six months before you not any improvement. We both have a lot of healing to do both physically and emotionally. How have you found the prostap? I was on Zoladex for six months prior to surgery. The first month was hell but had so much relief after that, plus it gave me a chance to see what menopause was like. Although I must say the hot flushes are a lot more severe now. Looking forward to going on hrt in a couple of months which hopefully will help. Look after yourself and if you ever want to talk I'm here.