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Endometriosis

(28 Posts)
geordieminx Thu 23-Jul-09 20:32:26

Basically after having problems for a while, dr is referring me to gyny for keyhole surgery with suspected endometriosis.

I know absolutley nothing about it other-than-- the scary stuff that came up on google.

Can anyone tell me anything about it, things that could help etc etc?

Many Thanks

Vigilanteawarenessraiser Thu 23-Jul-09 21:24:04

Hi Geordieminx,
Sorry you're going through this.
I'd say the best thing to do is find your local support group and go along for a chat. They will be really friendly and answer all your questions.
If you're a Geordieminx, are you in or near Newcastle? The Newcastle group is meeting on Mon evening 3rd August and there will be cake.
If you're somewhere else, find your local group here.
Or look here for another good source of information.

There's so much to tell that it's hard to know where to start! Except that there is huge variation in how badly people are affected, so try not to worry too much (I know it's really hard) until you know a bit more about what you have exactly. It's worth reading up on it, because it helps you make the best treatment decisions. The symptoms can be alleviated, so it's not all doom and gloom - I'm in remission at the moment.

If you want to offload a bit - what are your symptoms now? Are you feeling really ill?
Is there anything in particular you want to ask? I assume you know what it is?

geordieminx Thu 23-Jul-09 22:02:28

wow, thanks for all of that, its really kind of you.

Although originally from newcastle, i'm in glasgow now, but will have a look to see if there is a group local to me.

I dont think my symptoms are too bad, although i havent really got anything to measure them against? Just past 4 or 5 months a lot of bleeding in between periods, cramping most of the month, severe constipation and general under the weatherness?

I've been referred to the local hospital, but hope its either soon or ages away as i'm getting married in 10 weeks.

rookiemater Thu 23-Jul-09 22:15:44

Hi there, the website vigilant has linked to is excellent for information.

It is excellent that you are getting taken seriously and seem to have been recommended for a laparoscopy ( presumably thats the op that you are going for).

The lap itself isn't too bad, there will be some discomfort in your shoulders due to the air getting pumped around.

Apparently up to 1 in 10 women have endometriosis so symptoms can range from very mild to more severe, and once you get a diagnosis from the lap then your consultant will be able to recommend a suitable course of treatment.

I hope you have a wonderful wedding. Are you going anywhere nice on honeymoon ?

geordieminx Thu 23-Jul-09 22:37:38

i have a truely fantastic doctor (she's a mn'er wink), and am really grateful that its being progressed.

Are there any links between it and bloatedness/swelling? I've been on a diet forever for a few months now, but at least 3 or 4 times a month my tummy seems to swell for no real reason. Weight loss is slower too. sad

We are off to new york for our honeymoon, just for 4 days, as we have a ds who's 2, who will be staying with granny... Any more than a month a few days and i'd miss him too much grin

rookiemater Thu 23-Jul-09 23:02:31

Good news about your doctor , waves to geordieminxes doctor. My practice ( once I finally got a diagnosis) have been super helpful and it makes a real difference if you aren't pushing to be taken seriously.

I don't know about bloating, it's not a symptom I get. I am finding it hard to loose weight but suspect thats more to do with the quarter tub of Ben & Jerrys I just ate rather than any deep lying physical problem.

New York will be fab,

rookiemater Thu 23-Jul-09 23:02:34

Good news about your doctor , waves to geordieminxes doctor. My practice ( once I finally got a diagnosis) have been super helpful and it makes a real difference if you aren't pushing to be taken seriously.

I don't know about bloating, it's not a symptom I get. I am finding it hard to loose weight but suspect thats more to do with the quarter tub of Ben & Jerrys I just ate rather than any deep lying physical problem.

New York will be fab,

Vigilanteawarenessraiser Thu 23-Jul-09 23:35:19

Bloating is linked, so far as I know. My tummy swells too, though not so much now as it used to.
Glad the info is useful. It might be really useful to go to a group - they can be really welcoming and should answer your questions in a relaxed and supportive way. It's easier than chatting online, and they will understand all the problems you're going through and might have some advice about specialists in the area.
Fantastic doctors are worth their weight in gold. I only have fantastic ones now, but I had awful ones before, which makes me really appreciate the difference.
Have a lovely wedding!
vigilante

AttilaTheMeerkat Fri 24-Jul-09 07:09:41

Geordieminx,

Sorry to read about this. Fellow endo sufferer myself, would be glad to answer any questions. My symptoms prior to diagnosis including extremely painful periods, clotting (brown blood is old blood), stomach cramps and back pain. Deep pain during intercourse can also be indicative of endo being present.

Am glad you've been referred; some GPs are pretty much hopeless when it comes to gynae issues.

The usual way it is diagnosed is via a laparoscopy which is keyhole surgery.

Endo is enigmatic; "mild" disease can cause a lot of pain whilst "chronic" does not. The underlying causes of this disease are not fully understood. There seems to be some familial links.

www.endo.org.ukis the website of Endometriosis UK which is a charity set up to help women with endometriosis. Its a very good website and has lots of good quality information on it.

Vigilanteawarenessraiser Fri 24-Jul-09 23:14:11

Not sure that's quite right about the pain, Attila ('"mild" disease can cause a lot of pain whilst "chronic" does not'). So far as I know, several studies have shown no correlation between amount of disease and pain, i.e. mild disease can cause severe pain, but extensive disease causes severe pain just as frqeuently as mild disease. Too tired to look up references tonight, but will look them up for you if you want. Also, deep invasive disease behaves differently to superficial (lots of gynaes apparently don't know this), and both of these can be more or less extensive. It is very complicated

I do also speak from experience...wink

geordieminx Sat 25-Jul-09 20:06:02

Hello.... I'm back.

Question - obviously the dr has reffered me to local hospital for consultation the laparoscopy. No idea what the waiting times are, but as mentioned I'm getting married in 10 weeks.

My grandad has phoned me today to say that he would like to pay for me to be seen privately. Its not something I had considered...obviously if I had found a lump or something then I would have no hesitation but am not sure whether its really necessary IYKWIM?

Anyway, I rang the local BUPA, just to find out how much it would be (((naive emoticon))), spoke to some lady who said I should have it done sooner rather than later, certainly before October. Now she has put the fear of god into me, although the rational part of my brain says that she is a sales woman, of course she is going to say that.

Any thoughts/advice would be appreciated.

tryingtobemarypoppins Sat 25-Jul-09 20:14:43

Just wondering about the pill geordieminx. I'm sure I read this helps against Endo??? Perhaps whilst your waiting??

geordieminx Sat 25-Jul-09 20:28:21

I had thought about that, but selfishly I dont want to put on a pile of weight before wedding. My dress only just fits. sad

God that sounds shit doesnt it? Its just I have battled with my weight all of my life, its not perfect just now, but I couldnt bare to put on 2 stone like I did the last time I took the pill. I have the non-hormonal coil just now.

tryingtobemarypoppins Sat 25-Jul-09 20:35:44

Yasmin made me lose weight, I was 8.5 stone, after 3 months 8 stone???

geordieminx Sun 26-Jul-09 09:17:57

bump for atilla and vigilant.

Vigilanteawarenessraiser Sun 26-Jul-09 14:09:52

Ok, that's tricky. I would say it really depends on exactly what sort of symptoms you have. It's an illness that can vary so hugely in severity. My own opinion is (disclaimer - I am not medically qualified, though very experienced as an endo sufferer) if your symptoms are mild, it's probably ok to wait. Ideally you should be seen more quickly, but that isn't always possible on the NHS and being seen quickly might not fit in with your plans right now anyway.

However, if you have any of the following symptoms, get seen as quickly as possible: rectal pain during your period, difficulty passing stools or urine during your period, repeated UTIs or severe bowel problems, or any history of these. These can indicate extensive bowel/rectal or urinary tract involvement. Going privately might be good, but it's worth trying to find out someting about who's the best specialist in your area. Some gynaecologists don't know much about endo - it can be a hugely complex illness with far-reaching consequences for the sufferer, and in some cases requires a high level of surgical skill to to sort it. If you are a complex case, you may also need to be seen by a colorectal surgeon, urologist or gastroenterologist.

Statistically, though, most people don't have extensive bowel/urinary tract involvement, so you don't need to worry too much (unless your symptoms began when you were very young, i.e. under 15, which increases the risk). If you don't have any of the more worrying symptoms, only you know how badly your symptoms are affecting your day-to-day life and how long you can put up with waiting. You could wait until after your honeymoon and get seen then. The only (slight) risk is, that nobody really knows what you actually have until they've had a look via laparoscopy. For example, if you have ovarian involvement you are at increased risk for cysts. If you are ever in acute pain you should be seen urgently, as it could indicate a ruptured or an about-to-rupture cyst.

(I don't know much about waiting times on the NHS, btw, as I lived abroad when I became very ill and so the most complex parts of my treatment were done on the continent. When I moved back here, there was only really follow-up to be done by the gynaecologist. For my ongoing problems I am seen by the colorectal and gastroenterology people rather than gynaecology, and I think it took about 10 weeks to get my first appointment.)

Whether the pill would help you depends very much on how severe it is. Severe cases don't tend to be helped by taking the pill, but I believe mild/moderate cases can be controlled quite well by it. There are several different brands that can be used, so it might be worth seeing if there's another brand that's better suited to you. I can understand that you don't want to gain weight unnecessarily! If it makes you feel bad, then it's probably not worth it. (what's the dress like, btw?)

Another option that was offered to me is the mirena coil. I've been told this can help control it. Maybe it might be an option for you? I refused it myself, as I don't think it would be right for me for various reasons, but might try it in the future if my current treatment lets me down. (My current treatment is the natural progesterone cream sold here which has worked well for me in the past).

I hope this helps, and doesn't put the fear of God into you like the BUPA lady. Please, don't worry too much - I know it's hard, but until you know you have reason to worry, it's better to assume that you'll be one of the milder cases, iyswim. Even if not, it's not the end of the world - there are lots of people who are going through this themselves and who will help you through it.

Take care,
Vigilante

geordieminx Sun 26-Jul-09 14:33:15

I have been constipated for the past 3 months... Only manage to go once a week, after taking 2 or 3 doeses of Senikot blush

Vigilanteawarenessraiser Sun 26-Jul-09 16:05:37

Sorry to hear that - that must be very uncomfortable. If I were you, then, I wouldn't want to wait long before being seen, just to be on the safe side. I take it you've told your GP you're so constipated? It might have nothing to do with the endo, but it should be looked at. Is it the Glasgow Royal Infirmary (or whatever it's called) that you're being referred to? Could you phone them and ask how long you'll have to wait? Maybe say you'd be willing to take a cancellation?

If you do go private, it's worth bearing in mind that you can be seen much more quickly but it won't necessarily be by someone better. If you get the chance to go to a local support group, they might know more about who is good locally - and they won't have another agenda like BUPA woman. Think you're right to be cautious there.

Even if you do get seen earlier, I think you are unlikely to get a lap within 10 weeks on the NHS - but who knows. If you do get one earlier, you need to allow a week afterwards to feel completely back to normal - you won't feel up to rushing around immediately afterwards.

The big advantage of going private is, I suppose, that you don't have it hanging over you for as long. I think just before a wedding must be one of the worst possible times to get ill.

Your granddad sounds lovely!

shelleylou Sun 26-Jul-09 16:19:24

As vigilante said the pill is surposed to help with symptons only it had the opposite affect for me. I used micorgynon 30 and Yasmin. I have found that depo has helped releave the majority of symptons since the initial treatment i was given.
After being refered to a consultant i got my lap date through very quickly think it was about 3 weeks and i got the date at my consultation. Not sure how common that is though.
With regards to the BUPA lady I think shes using scare tactics to try to get you to go private. I suffered with endo for best part of a year before getting referred to a consultant. Once the lap was done follow up appointments were arranged soon afterwards.

AttilaTheMeerkat Sun 26-Jul-09 18:14:13

Would agree with vigilante here; depends very much on your symptoms and whether you have mentioned your constipation to them previously. That issue certainly needs to be checked out properly sooner rather than later. If this was me I would want to be seen medically sooner rather than later.

When I was diagnosed with endo at 31 I just thought, "no wonder I have been in pain all these years since 14 years of age"

Your grandad sounds lovely too offering to pay for you to be seen privately.

rookiemater Sun 26-Jul-09 19:18:47

Hi vigilante, can I hijack slightly. Very interested in the cream you recommend. Do you honestly think a cream can make a difference? I'm off all medication now as TTC no 2, but don't think I will be able to keep going for long.

Geordie - if you are keen to be seen quickly then you could go private for the initial appointment which is around £100, then get referred to the NHS list for actually getting the surgery done as most consultants work privately and on the NHS as well.

A concern about getting the op done privately is that with a lap they don't really know what they are going to find when they get in there so surgery may go on longer than anticipated and if there are any complications cost you a lot more than expected.

I don't blame you about not wanting to put on weight. Before my lap I had done really well and lost some weight but over the past few months I have been on hormonal treatment and for various reasons put on weight. It's not vain, well ok it is a little, but with perseverence you should be able to find the medication that suits.

Vigilanteawarenessraiser Sun 26-Jul-09 21:01:43

Geordieminx, have you tried posting on this chatroom? Warning: someone once pointed out to me that only the people with the most severe problems post in chatrooms, and I tend to avoid this site for that reason. It's easy to forget it's not all doom and gloom - but it's a really good forum if you want opinions from lots of different fellow sufferers. Some are bound to be in your area.

Rookiemater, you can get natural progesterone in several other forms (tablets, pessaries, suppositaries) and it doesn't matter whichever you take. One of the advantages of a cream is you can use less of the drug because it doesn't have to go through your stomach and be filtered by your liver, it just gets absorbed through your skin, stored in your body fat and then used up. I find it pleasanter to use than pessaries and suppositaries, though some people swear by these. You can be prescribed most of these on the NHS, though most doctors don't realise that they're different to synthetic progesterones (progestins) like norethisterone, which are harder to tolerate and have side effects. I started using the cream when I was 17 or so. My endo kicked in a month after my 13th birthday, and I spent my teenage years struggling with the symptoms. I wasn't diagnosed at that time, but was put on several conventional treatments and painkillers (the pill, mefenamic acid, tranexamic acid, co-proxamol etc.), none of which worked. My mother heard of natural progesterone cream through a lecture by a London gynaecologist that she attended through work, and, in desperation, I tried it. It worked far better than anything I had tried so far, so I stayed on it for some time. I eventually stopped taking it as I was concerned about the implications of taking a fairly potent drug while not under medical supervision (my GP's reaction was 'oh well, if you really think it works, it can't do any harm'). Soon my problems started up again, so I re-started the cream and it sorted everthing out like magic. About a year later I stopped taking it again for the same reasons as previously. Within 3 years I became very ill, and was finally diagnosed aged 26. Five months later I underwent seven hours of surgery to remove a section of bowel, a piece of ovary, part of my peritoneum, a whole lot of adhesions and endo on my uterus. After that I was given 9 months of decapeptyl (GNRH agonist, similar to lupron or zoladex) without HRT. When I came off the decapeptyl, my gynaecologist wanted to take further measures to prevent a recurrence and recommended the mirena coil. I didn't want the mirena but did want to take some preventative action as my options for medical treatment will be limited if I get a recurrence soon: I've already been on decapeptyl for too long without HRT, and I maybe can't take progestins again because of a very bad reaction to orgametril before my surgery - don't know if it's just orgametril that's the problem, or whether I'll react that way to other progestins as well. The pill has never helped, and I did suffer from side effects (tried 2 newer brands round the time I was diagnosed, before the orgametril). So the progesterone cream starts to look like a very attractive option for me, especially as there seem to be no real side effects or potential for allergic reactions and I have found a private doctor who specialises in bio-identical hormones and will supervise me see here. So yes, to answer your question, it has helped me more than anything except seven hours of surgery and nine months of decapeptyl, both of which, though very necessary, were pretty extreme. It gave me the only 2 periods of remission I experienced between the ages of 13 and 26. I think if I hadn't used the cream when I was younger, I would have got much iller much quicker. I also think it's unlikely that it's a placebo effect, as I would have got relief from something else earlier, iyswim. I don't know, obviously, if it would help you, but might be worth a try.

Sorry for horrendously long reply to a short question.

Geordieminx, my story shouldn't worry you - even though I had the endo very severely, I'm absolutely fine at the moment. I'm really enjoying my periods - sounds weird, but I didn't know they were meant to be like this.

I think rookiemater's suggestion about going privately for the first consultation and then NHS sounds really sensible. why don't I think of things like that?

rookiemater Sun 26-Jul-09 21:33:48

Thanks vigilantea, I do appreciate the thorough answer and I have put my order in as although I was fairly pain free for all the years on the pill provided I didn't take cycle breaks, I'm not sure how well it will work for me this time. Plus consultant said that we could TTC for 6 months and if it hadn't happened by then, it was unlikely to (I'm 39 and its Stage IV endo), but atm I don't think I will last that long. I went to the homeopath and am on a delightful combination of agnus castus tincture (bleargh) and various other pills but it is expensive and I'm not sure if it helps or not.

Geordie,one thing occurs to me re the constipation. If you are taking a lot of painkillers then that can cause it as well, particularly if you aren't eating and drinking much, this would also give you bloating as well. May not be the cause but thought it was worth mentioning.

Oh and re the endo chat room. I have to admit I still find it a bit scary, even though I have been diagnosed for about 9 months now. It's important to remember that women tend mainly to post when endo is a problem and not so much when it is not bothering them, so do keep that in mind if you go there. Having said that it can provide invaluable advice, although the cream is a new one on me !

Vigilanteawarenessraiser Sun 26-Jul-09 23:11:55

glad it's not just me that gets scared in the endo chat room.

goodnight!

PacificDogwood Mon 27-Jul-09 20:44:59

Hi, Geordieminx, thank you for the link and of course I do not mind being CATted (if that's a wordhmm).

I just read the thread I and think there is an awful lot of good advice on here including bear in mind that symptoms of endometriosis (if that is indeed what you have) vary enormously and that you always here more horror stories than "oh, yes, I have endo but it does not give my much bother"!

Go for a consultation privately if you (or your lovely granddad) can afford it - it will save time but NOT buy you better care, just be aware of that. By going for a consultation you do not commit to anything further, ie if you were to go for a laparoscopy then you could still be referred beack into the NHS as I think you'd then be talking about 4 figure sums, although I am not sure. Do not trust the advice of some admin woman who spoke to you on the phone!

Can I e-mail you back? I'll wait for your reply here before I do.

smile

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