My story...general advice please, feeling... - Endometriosis UK

Endometriosis UK
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My story...general advice please, feeling very low

Vincentcat
Vincentcat

Hi there

I've been reading the posts and looking on this community for many months but not actually had the courage to write my story yet. I thank all you ladies for your posts and your bravery, I truly believe only fellow endo sufferers can truly understand what it's like to live with this debilitating disease. So, where do I start...

I've always suffered with painful heavy periods from being 11. In 2016 I fell pregnant but had a miscarriage at 13 weeks. I fell pregnant again a few months later and had my baby by c-section in July 2017. Within the next few months I experienced a lot of pain in my abdomen and left side, i was in and out of hospital with no diagnosis. Around March 2018 I was in hospital for the umpteenth time and a doctor suggested endo, i'd never heard of it, but explained the unbelievable waiting list on the NHS. So I went privately through a BSGE specialist and had my laparoscopy by June. They found extensive adhesions from the section scar, attaching itself to my abdomen from my external scar up to my naval. They removed endo from my uterus and extensively on either side of my rectum. They said my section had been the catalyst that gave my endo a boost to spread quickly.

After the op I suffered a large heamatoma in my pouch of Douglas causing additional pain. I was told this would have to heal on its own and would take many months. I was in and out of A&E for many months following my op because of awful pain. However I felt very dismissed each time I went back as I was just told again and again there's nothing we can do about the heamatoma, go home, basically!

I started the prostap hormone suppressant injections the beginning of October as a last resort, taking HRT livial alongside. I have persevered for 3 months but won't be getting anymore injections as my experience has been terrible (moody, angry, tearful, suicidal, irrational, still had a full cycle ovaliating and menstruating, hot flushes, tinnitus) and it has truly affected the state of my marriage.

Since then I've been on regular codeine 60mg, laxatives, anti sickness, amitriptyline and oramorph. I'm rarely able to get out of bed. I have toe curling pain when I wee and bowel spasms when I open my bowels which leave me in a cold sweat with the pain. My Mum helps me with my daughter most days and my husband is exhausted all the time because I can do so little.

I am in constant pain and feel overwhelming guilt for the lack of care and time I can give to my beautiful daughter and my marriage. I have no social life and often cancel any arrangement with family or friends at short notice because im in tok much pain or havent slept becaude of pain. I feel low a lot of the time and have been taking antidepressants for many years.

I'm on a 9 month waiting list for my 2nd lap and see my consultant next on 21st of this month. I realise how terribly negative I sound but I'm struggling to see the light at the end of the tunnel at the moment and I realised that you ladies are the only people who would truly understand my story.

Thanks so much for reading, sorry for the essay. This group is wonderfully supportive and brings a wealth of knowledge from all our varying experiences, for this I thank you all

Bex xxxx

4 Replies
oldestnewest

Hey there,

Firstly , good for you having the courage to share your story. Gosh you have been through such a tough time I feel for you so much.

I am also fairly new to this site myself and have found it very good to chat to other women who are the only people who truly understand what we are going through.

I also had the prostap let summer and only managed 2 Injections before giving up - for similar reasons to yourself.

I had my second lap just 2 days ago and although I am happy they removed it all, I am feeling worried about how long it is going to last for. It hard to stay positive with this disease isn’t it.

One thing I have heard and read really good things about for chronic pain, inflammatory etc is CBD oil - have u tried it it? I haven’t tried it myself yet but am really thinking of trying it.

7 months waiting list is dreadful! Where are you from?

Sorry I haven’t directly helped you much at all but it is good to talk to someone else sometimes who understands. I hope you’re appointment goes well this month and Lee is updated how you get on. Xxx

Vincentcat
Vincentcat
in reply to JL0ck

Thank you so much for your reply JL0ck. Like you say just good to share stories so we don't feel so alone in this.

Did they let you know how your second lap went e.g. what they found and things?

I'm from Neston in Cheshire so I have my appointments and procedures at Arrowe Park Hospital, it's registered as a BSGE centre with 3 specialists in the team, I'm guessing what makes for the long waiting list. The consultant I'm seeing was the one who operated on me privately.

Is the CBD oil the cannabis oil? I'm desperate to try that but from what I've read they're only giving it out to very extreme cases, if only they truly new how extreme our pain is! My Dad has nerve damage from a fall many years ago and has constant pain and his doctor wasn't able to get it for him.

I know what you mean about wondering how long it will last. I'm 29 and with my first baby having been such an ordeal (hyperemesis, pre and post natal depression, post partum psychosis and baby had a milk allergy so didn't sleep and projectile vomitted for first 9 months) I don't want anymore children but I've read mixed reviews about whether a hysterectomy would cure my endo or not.

Do you have children? Do you mind me asking if you've thought about this option? What kind of endo do you have?

Hope you have a speedy recovery, I can recommend a lot of good things on Netflix for while your resting in bed ;)

Xxx

JL0ck
JL0ck
in reply to Vincentcat

No problem at all Vincentcat. I can u derstand how desperate and low you must feel :-(

I have heard a few people ordering the CBD oil themselves but obviously you want to make sure it’s from a good/trusted source. I know a couple of reflexologist in the Liverpool area who can recommend and order it so I may try that.

Gosh, no wonder you don’t want anymore children. I have one little boy who is nearly 3 and I have suffered with this since I had him but was o it diagnosed this time last year after my first lap. I have suffered with painful/heavy periods from the age of 13 but things definitely got worse since giving birth. I am therefore so undecided as to whether I want to try again or not.

The surgeon came to see me when I had just come round after surgery so was still a bit out of it. Plus I have my notes. I do remember her saying I had a lot done and an awful lot more on the left side of my pelvic wall, my colon (which was attached to the pelvic wall) and extensive superficial endo on both ovaries and tubes and uterus. They had to made 4 incisions to get it all.

They removed it all without damaging anything which is good and not seeing my consultant now for 6 months as she had removed it all so just got to hope it stays away.

It worries me how much worse it seems in less than 12 months :-( and really don’t know what the next step will be if/when it comes back.

But yes, I have thought of a hysterectomy in the near future.

How about you? Have you thought about a hysterectomy? It’s such a big decision for you to make so young isn’t it but you seem to be struggling so much which is cruel :-(

Haha thank you. I am only ok day 2 and am getting bored!!! Xx

JL0ck
JL0ck
in reply to Vincentcat

Sorry, I have just realised you hadn’t said how old you are haha. I assume you are however still too young to be having to think about these decisions :-( I’m 34

Jen xx

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