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been reading endometriosis threads (tmi)

(74 Posts)
ghostonthecanvas Mon 21-Oct-13 10:54:20

They are really helpful. I learned a lot. Which has left me with more questions. I was diagnosed with endo 25 years ago. Tried loads of different medicines. At the moment mefanemic acid and TA. They don't work for the pain. Fixed the flooding and clotting. The pain has increased and passing more of what I assume to be endo tissue. I was wondering who has had medical procedures and what are they and how effective were they? Also I found a reference to ' javelin arse'! Which describes exactly the pain in my backside - I always thought it was linked to my piles blush - what is the fastest acting painkiller for that? I am going back to my GP asap as I was reduced to tears in a public place this week, literally couldn't speak. Any advice before going would be appreciated as I don't want to be fobbed off again. Oh and also, I seem to be developing a problem with passing wind through my vagina specially when I have my period. I have no control over it and it is loud! This I haven't come across on mumsnet. Is it common? Any ideas about the cause? TIA

MissMarplesBloomers Thu 31-Oct-13 20:55:44

Thing is DD has pain month round, then really bad with the periods normally. Since she has been on continous mini=pill at least thats helped that problem.

she has a satsuma size ovarian cyst on the left & a blood filled one a bit bigger on the right. I think its those dragging round that give her the pain some days, so the chocolate cysts they think she has every where else may be subsiding with the pill.

They were going to delay surgery till Christmas to try & minimise the time off school but she has had a terrible half term, then had this week off too so whats the point in delaying things?

She's getting so down & I don't know how to lift her mood sad

ghostonthecanvas Thu 31-Oct-13 23:19:56

Bloody hell missmarples. Your poor DD. You too. That sounds really sore and it is awful when we see our kids in pain. Hugs for you all. Squashy warm hugs flowers too ♥. I am not surprised she is down. I hope they get a move on with her treatment.

MissMarplesBloomers Sun 03-Nov-13 20:25:13

Well the consultants secretary was very helpful, she is going to ask the surgeon if we can move things forward, DD has a scan booked for next Sat to compare with the one back in April.

Meanwhile DD has said she is quitting 6th form as she sees no point if she can't keep up the work, she has missed 2 weeks out of the 7 already & is worried about catching up.

Talking to her tutor tomorrow. Thanks for the hugs !

ghostonthecanvas Mon 04-Nov-13 09:10:41

Hope it all gets brought forward and the school understand and put something together for your daughter. Keep us posted.

MissMarplesBloomers Sat 09-Nov-13 23:08:51

Ok scan today, should be available for her consultant to see on Monday. I will speak to his sec & ask her to remind him to look at it asap.

Things came to a head after my last post, lots of tears & talks.

Tutors all agree with her & been quite worried about her,she can't catch up now. So that's it no more school sad

Plan is to get her op sorted & hope that makes things better (or controllable at least) & have a year out & restart 6th from next Sept either at school or a local college. Once she is over the op we're going to look at home study just to keep her brain active & see where that leads.

Massive changes for us both. But as long as she is getting better it doesn't matter.

ghostonthecanvas Sun 10-Nov-13 15:57:19

She may well find later studying is more interesting. Keep us posted on Monday. It has interfered with her life too much as it is.

MissMarplesBloomers Sun 10-Nov-13 23:45:22

Thanks Ghost yes it has, bastard disease.

She should be out having fun not needing a 2 hr nap to get her through the day. sad

How are you doing anyway?

ghostonthecanvas Mon 11-Nov-13 19:15:15

I am linking headaches to my period and painkillers don't touch them sad. Other than that, life is ok 2 weeks out of four.
How did the meeting with the consultant go today?

MissMarplesBloomers Tue 12-Nov-13 08:43:45

Dd had horrendous migraines before the endo diagnosis. Might be worth looking at migraine treatments?

Still trying to get hold of consultant on phone.

ghostonthecanvas Wed 13-Nov-13 08:50:52

Hope you have more luck on phone today

ghostonthecanvas Sat 16-Nov-13 12:42:44

Well due to a prescription misunderstanding I had no mef A at the start of my period tho I still took TA. Pharmacist gave me solpadiene to get me through. The pain I had yesterday was 10x worse than any I have experienced before and I have had some doozeys in the past. The solpadiene was useless. I am horrified at what the acids were masking. Surely my body is being damaged in some way by hiding the symptoms? Why is this acceptable? Attila said it was a sticking plaster. Ffs the state I was in. I had already made an appt with GP. Have done some research. I am right in saying MA and TA simply mask and zoladex, coil and contraceptive implants stop the endo? Ablation, coloscopy treat it? I know really all I insist to the GP is specialist gynaecologist but I am damned if I am going to be fobbed off. I want rid now. Have I missed anything out? I am googling sites attilla recommended again later in the hope new things have been tried. Thank god for MN. I had new sweary words to use yesterday grin

ghostonthecanvas Sat 16-Nov-13 13:12:48

Also, where does all the tissue go when you have pain but nothing to show for it iyswim? I thought the pain was lining wandering about blush

MissMarplesBloomers Thu 28-Nov-13 00:45:54

Hiya ghosty

The endometrial cells that line the uterus "migrate" & are called chocolate cysts because they have dark red blood on laproscopy. The rogue cells then behave exactly like the ones in the uterus ie they swell under normal hormonal cycles and then bleed at period time. But because the pelvis isn't designed to have bleeds,& has no way of disposing of it, the blood irritates the area (giving the horrendous pain) and inflammation. Inflammation can cause scar tissue & lead to the scars sticking together, known as adhesions as these can lead to all sorts of nasty complications.

<lecture over!>

DD has a laparoscopy tomorrow- it all came together rather quickly, which is good really. She is quite nervous (understandable) but glad to get it done.

We invested in a TENS machine which has REALLY helped her pain levels, she can cope with just paracetemol &+ ibrupofen which is great.

MissMarplesBloomers Thu 28-Nov-13 00:48:13

this one

Very cheap & cheerful quality ( light & plastic) but it works!

MrsCakesPremonition Thu 28-Nov-13 00:55:22

I just wanted to wish your DD all the best MissMarples. Stock up on peppermint tea to help get rid of the gas and I hope she has a quick ans smooth recovery.

MissMarplesBloomers Thu 28-Nov-13 01:00:32

Thanks MrsC I have a box, and chamomile too!

ghostonthecanvas Thu 28-Nov-13 13:08:49

I loved that feeling after having a laperoscopy. Can only describe it as 'new and fresh'. I hope your daughter feels the same. It's a positive step for her. I too wish her all the best.

Thanks for the lecture! I have asked the gp for and appointment with an a gynae specialising in endo. She was confused Fingers crossed.

TeaTowelQueen Thu 28-Nov-13 13:22:36

Oh dear, you sound just like me - I do faint with the severe spasms of pain, not the general 'ache' as they like to call it which just doubles me up, also have it in pouch of douglas. Have you ever tried Provera or Cerelle - latter can be given by doc, progesterone only tablets. I get no periods now but it doesn't suit everyone - you really need to be referred to a specialist, GPs just don't have the scope and experience. I have found it to be trial and error and being REALLY persistent. Have also thought I might as well get the whole lot ripped out but seems a bit drastic. I do get the feeling though that because I am in my early (ahem) forties they are hanging out for my menopause to kick in!!

Good luck x

ghostonthecanvas Thu 28-Nov-13 13:39:17

TeaTowelQueen you have my every sympathy. Horrible disease. I feel that I have drifted long enough now. My husband had to help me off the bathroom floor this month. So even if I hadn't already decided to be more pro active he would be kicking my butt to the docs anyway. I may be just a tiny bit older than you wink and I felt that I could manage til the menopause but no.

MissMarplesBloomers Sat 30-Nov-13 10:29:24

Hello all,

Well what a week. DD got a cancellation appointment after I laid it on thick with the consultants secretary about how DD had dropped out of 6th form bc of the pain etc etc. She was very nice & I think hassled the surgeon a bit too. smile

SO on Thursday we were in to the day case surgical unit. She got a side room so I could stay with her which was kind of them as normally its patients only (for obvs reasons) The consultant popped in to see her before the op & after to explain all to me , honestly couldn't have had better if we'd gone private ( well posh carpets & curtains but hey....!)
The NHS at its best & to be frank after the shitty treatment she's had over the last 2 years being pushed from pillar to post, a refreshing change.
<cynical part of me wonders if Nice Consultant realises I could make a complaint after the surgical team took her appendix out for nothing & is trying to keep me sweet!>

ANYHOW he managed to remove the offending dermoid cyst from her ovary eaving 2/3 behind so all good there but best part was he had a good look round & there was NO ENDOMETRIOSIS!!! he was pleasantly surprised he said, given her symptoms.

Now being a mistrusting old bag I'm not going to celebrate too much just yet until she's recovered fully from the op & has had a couple of pain free cycles but the relief that it was "only" a cyst & operable.

2014 is going to be a better year for her hopefully....ya-bloody-hoo!!!

ghostonthecanvas Sat 30-Nov-13 14:42:33

Pleased for her MissM. I reread what you wrote about the cysts upthread and I am shocked they left her so long. I hope all will be well now. flowers to you both. Keep us posted.

MissMarplesBloomers Sat 30-Nov-13 23:46:39

Thanks Ghostie- you made that GP appt yet?!

ghostonthecanvas Sun 01-Dec-13 12:47:05

I have actually been! Also had a house call blush couldn't manage the pain. I asked GP for endo specialist. She didn't know there was such a thing. Fingers crossed.

MissMarplesBloomers Mon 02-Dec-13 22:51:19

Good for you! Can't believe your GP didn't know about endo specialists, there are all sorts of specialisms within each type of surgery.

Keep pushing for it!

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