I had my post op consultation yesterday, 6 weeks after my lap. Something I learnt was that the sooner you are seen for your post op is related to the severity of your endo. If someone has minor endo they will most likely wait around 3 months for their post op. (It might help others to know what to expect).
I've been told I have stage 4 endo and was shown an extended version of the video I was briefly shown following my lap. My pelvis is quite literally riddled with endo, my bowel is covered in endo, recto-vaginal nodules and endo on my diaphragm. My gyne has referred me to a BSGE clinic but has reassured me he will still be involved in my treatment. My main worry was losing him as my gyne if I was referred but he said that won't happen.
The next step for me is to have a colonoscopy which my gyne has urged me to do privately to speed it up. He's concerned endo has penetrated my bowel and wants to take immediate action but voiced concerns about the waiting times on the NHS. I've got a lot of hope pinned on the outcome of the colonoscopy and I'm afraid hoe I will cope if it's bad news.
On top of all this I was diagnosed with interstitial cystitis. I have been referred for treatment which involves visiting the hospital once a week for 3 months to have a catheter inserted and a substance put in to my bladder. If this doesn't work there is a more invasive procedure they can perform.
Im glad I've got a plan but I'm scared to put myself through all of this and my symptoms not improve. I guess I've got no choice but to try and hope things will get better, it's all any of us can do.
One small piece of good news is that I don't have endo on my ovaries and my gyne said my fertility shouldn't be affected at this point. But admitted it's difficult to say with this disease.
I have so much to be thankful for and I'm trying to focus on that to get me through this. I'm seriously considering a change in career to enable me to have more flexibility at work and think this may be key to my general well being.
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LouLouT
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This is going to be a fairly long list so bear with.
Severe abdominal pain - shooting, stabbing, burning, cramping, cold sensation, prickling, pain when passing wind, pain when having a bowel movement. The first time I was aware of blood with BM was a black stool then around 5yrs later blood when having a BM and now I also have episodes where it feels like a BM but I only pass blood. This is mainly when on my period but can happen any time of the month. Pain underneath my ribs (mainly right side) mostly just when I'm on my period, my breasts swell to at least one bras size larger every period, diarrhoea, constipation, vomiting (rarely), nausea, fainting, fatigue, muscle weakness aches and pains, cold/ flu like symptoms every single period and I always have a mouth full of ulcers the week of my period. Urgency and frequency to wee. Pain when weeing and severe right sided pain if I can't empty my bladder when I need to. Pain when having intercorse during and after, shooting/ stinging pain up my vagina - this strangely seems to be connected to when I eat certain foods aswell 🤔 terrible lower back pain - I can't sleep lieing down when I'm on my period. Really bad heart burn/ indigestion, acid reflux. I also suffer from hemiplegic migraines, ocular migraines and joint hypermobility. There's a lot going on and I often don't know which symptom is related to what.
Ive probably forgotten something but I hope this helps 😊
That’s a lot of information for anyone to take in and it must feel like a huge weight on your shoulders at the moment. Can I ask where you’re based? I’m south coast (UK) but your story is so close to my own I was wondering if you were nearby.
I’m stage 4 endo with most of it on and around the bowel and I also have interstitial cystitis as well as adenomyosis, fibromyalgia and ME. When I was diagnosed with IC I was put straight forward for a bladder distension and wasn’t offered the catheter option. I don’t know why this is - perhaps it’s because I also have vaginismus and so physically, and I suppose psychologically, I would have found that quite difficult. I had also previously undergone a flexible cystoscopy. I have found the bladder distension to have worked really well but I know that’s not always the case. I hope your IC treatment works for you.
I too am waiting for massive surgeries on my bowel and also my bladder. And I’m not saying this is the right thing to do, but I’ve decided to put them off for as long as possible as I just wonder if the risks were worth it for me at the moment (possible stoma and making things worse rather than better). But that’s a very personal choice and your relationship with your consultant sounds wonderful so I’m sure they will help you through all of these decisions
I’ve kind of checked out of life at the moment - I’m finding it very difficult to stay positive but the biggest thing I’ve learned on this journey is that it’s totally okay to say ‘this is bloody rubbish and I’m not coping well today’. I used to force myself to always thing positively and sometimes that wasn’t always helpful. I find that my mental health deals with this disease in phases and currently I’m in a bit of a negative patch (which is perfectly understandable) but it will get better again. I have found that talking regularly to a specialised psychologist who has experience with dealing with long term/ chronic illness has been very helpful. She’s equipped me with some great coping strategies and tools for when things get a little too much.
I’ve never had a video of my pelvis - that sounds so interesting! I’ve only had my eccentric consultant draw funny little diagrams and show me photos. It must of been strange to get up close and personal with it all.
Anyway I hope this hasn’t sounded too negative, I just wanted to let you know you’re not on your own and many of us have a very similar diagnosis. And to also just reiterate that if there are days when thinking positive seems impossible, not to give yourself a hard time about it because it is really hard. But it will get better again sending gentle hugs xxxxx
Aww thank you, I've become somewhat robotic about it all. I think it's a defence mechanism, I don't like to admit it but I am struggling. I'm seeing my GP next week because I'm concerned about my mental health and want to have CBT again. I live in the South East (Berkshire).
My osteo thinks I have fibromyalgia but said it may be diffficult to get a diagnosis. I'm definitely suffering with fatigue, I had glandular fever last year but haven't felt "normal" for many years. My gyne said the bladder distension would be an option in the future if the catheter treatment doesn't work but I'm also taking a supplement called D-mannose which is really helping to protect my bladder. I've had a flexible cystoscopy in the past aswell as a rigid cystoscopy and urethral dilation.
I haven't decided yet whether I will go ahead with surgery on my bowel either. My gyne has made it very clear it's ultimately my choice and how I feel is the most important thing. I'm lucky to have had such a positive experience - it's my one shining beacon of light in an otherwise desolate and bleak outlook.
I totally get what you mean by checking out of life, I want to. I feel like I have nothing left to give, I'm completely exhausted on every level. I just want a break. There's an endo support meeting near me in a few weeks so I'm really looking forward to that. I'm doing the endomarch in London as well on the 31st March, are you going?
I think talking about it is important. Its good you've founds psychologist who can help.
The video was really helpful because it's difficult to understand somethingg without actually seeing it. And found it to be the most honest and open way to talk about what we are dealing with. More gynes should do it, I know not everyone would want to see it though.
I know it's impossible to be positive all the time but I find it helps to think of positive factors when thinking/ talking about negative things. It keeps my mind from falling in to an unhealthy cycle of thoughts. I practice mindulfullness which helps. I need to accept it's ok not to feel ok and stop putting others first, I'm sure we're all guilty of it.
Thank you, it means a lot. Sending hugs back 🤗 Hope you're ok?
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