Endometriosis UK
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Feeling Anxious

Let me start at the 'beginning' I've been suffering for 12 years but the 'beginning' was January 2015. I got pregnant after 11+ years of trying...what can I say I'm a fool and I ignored it all that time! I had a miscarriage aged 17, I'm now 31, so they catorgorized me as high risk so I got to have a scan at 4 weeks, anyway due to the findings of that scan I became very high risk, they found 9 blood filled cysts, the smallest being 3cm and the largest 11cm all blood filled and all filling the uterus surround and restricting the womb, but the baby was safe! I started to suffer pain the same day and it just got worse and worse so I had another scan at 6 weeks, they identified some of the cysts had grown and new ones started to developed, 3 in a cluster close to the cervix, and the big one had grown to a whopping 16cm and yet it seemed nobody was overly concerned, I was frantic inside but I let things be I just thought their the professionals let them do their job. A week passed and I was going to the hospital on the bus alone, my friend was meeting me there, and the bus crashed, it was like I was in a bubble I felt nothing, but I had been very shocked, I was taken to hospital in a an ambulance, precaution mainly, and I missed my scan...that was Monday, on the Friday I started to spot brown slime?! So I went the hospital had an emergency scan and found out I'd lost my much wanted, much loved baby at 6 weeks and 3 days meaning I'd lost the baby on Tuesday. The cysts were still growing and 2 were gone...I presume ruptured?! On the following Monday I had a D&C. They said come back in 6 weeks taking us to April. I had an internal scan, so I'm there and she says you only have 2 very big endo cysts. I was like Endo? And she went on to explain they'd suspected from the first scan I have Endo and this scan confirms it, I'm gonna need treatment so I come home and start googling like a maniac tying to fund out everything I can before I get the referral, anyway no refferal and I have to go the drs and ask for it, she didn't get any paperwork I need another scan so I'm annoyed at this point and need these antidepressants Citalapram more than ever, I was prescribed them after I lost the baby. i go back for the new scan and they found 9 large endo cysts this time, so i go to see a general gaenocologist surgeon he thinks he can defo help me! So Oct 8th I had a lap and they wanted me back 8th Nov for the results, the lady calls me in and I'm thinking where's the surgeon? He said he wanted to see me due to me not seeing him in the hospital the day of the lap...turns out this lady works under him and she's doing the appt, I'd seen the registrar at the appt before the op, he did an internal exam and called in the lady who runs the endo clinic to introduce us, anyway back to the 8th Nov I sit down with my partner and she goes on to say u had a bilateral cyst deroofing blah blah blah tells me he entire name of the op so I'm agreeing and she's says OK the findings were 2 quite large endo cysts that we deroofed, the left one went fantastically but the right one was more tricky, we couldn't remove the entire things its trapped because your right ovary is attached to your rectum and its fused with part of the cyst too and the Pouch of Douglas is restricted we couldn't access it, but I'm sure its fine, so I said at the pre op with the man he said he found a nodule in my bowel, and she said on no that's the ovary, and I replied he also said the PoD was gonna need rebuilding due to the Endo causing partial collapse, and she said erm no he didn't find anything else and me and my partner are sat there looking at each other in total confusion, she continues talking and before I know it she was kicking us out she said there's nothing else we can do for you now since you've expressed desire to have children so I suggest you go and do exactly that ask for a referral back in a year if you haven't conceived we'd be happy to see you again to discuss your options but nothing will change if you insist on children...if there's nothing else? I'm confused as f@#k at this point and we go...so today I'm trying to work out when I'm ovulating, I've tested daily since 9th Oct and not had a single positive result, still got very irregular periods that to be honest havent been bad since the op, my last few cycles have been 16, 21, 29, days and today I started bleeding 27 days this time, and this is where I am now, rolling round in bed in absolute agony, very black blood coming but its mainly clots and chunks...?! I've been convinced I was pregnant this month I felt what I can only describe as ovulation/egg travelling I felt it roll from the right ovary into the top of my uterus and down the left side then I felt it stop and it felt like something dug in like implantation...I know how crazy I sound but I felt SOMETHING and that's the closest I can describe it, a scratch and a pinch across 2 days...I promise I'm not crazy I'm trying to listen to my body more...! But that was 7/8 days ago. My nipples changed colour there darker, and a bit bigger not really sore, but since then I've had a few different things that helped me believe. What comes first pmt/pms? Well anyway its been very active his month and my stomach is very bloated low down close to the top of my vagina. My bum hole is throbbing :( I've had the worst bowel movements ugh! And my lower back is throbbing and my thighs/crotch I feel emotional mainly coz of the pain I'm not as disappointed as I have been either idk but anyway that's story welcome to the madhouse :) what would you do next if you were me? I'm confused and I'm talking myself out of doing ANYTHING I don't even know where to start, I feel like I need to know what stage they think I am and I'm wondering what I did in a previous life to deserve this punishment now :/ thanks for reading any ideas would be most welcome xx

1 Reply

Hey, firstly have you been seen by an endo specialist at an endo centre?


If so then you could ask for clarification of diagnosis/surgical outcome.

Re. Ttc we were told if not preg in 6months to start baseline tests so I don't know why they've said wait as long as a year. It does make a certain amount of sense that perhaps they wouldn't be able to excise the endo completely without risking you losing your womb if everything is stuck.

I don't know the finer details of surgical practice in relation to endo - there is a lady on here called Lindle who knows her stuff, send her a msg and ask where to go from here if your treatment has been conducted at an endo centre - if not then get your gp to refer you to one asap.

My only other thought is have they ever discussed polycystic ovarian syndrome with you? Just thinking if you've that many cysts and irregular periods it might make sense.

Re. Ttc - you need to take a deep breath and try to stay calm - I know it seems like 'everyone' is preg at this age and it's all over fb. But trust me most aren't. Trust that your time will come - I was told this by my mum and completely didn't believe her = lots of years of stressing.

The ovulation tests are a load of **** they are really expensive and from what I could tell totally unreliable!

We charted my temp (£10 thermometer) cervical mucus etc. And endo symptoms using this - temp was spot on! babycentre.co.uk/a7069/down...

Also we both took pregnacare preconception multivitamins & completely stopped drinking. I was on the endo diet and went to acupuncture weekly which helped me to deal with endo pain (I know it's awful when you're off the pill), it was also very relaxing - the girl I saw specialises in fertility acupuncture. Other tricks - orgasms before and after sex, did the whole legs up nonsense. I know you will have tried the majority if not all of this, there are lots of other women, myself included, who've been through or are going through the same as you - a month seems like an endless amount of time!

Set yourself other goals and focus on other areas of your life - whilst continuing to take care of yourself and ttc, it's important to not let it completely take over. Xx


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