Endometriosis UK
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Endo on the uterer does anyone elce have it I feal like I'm the only one

I can't find mutch about it it makes me want to pee heaps I get pains in the frunt parts and my kidney I'm on the depo and it helps but sometimes it still plays up I don't have endo like other people's so it's hard to find mutch about it

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Hi. Just had an mri and found endo again and scarring some of which is blocking the ureter and thus the kidey. I have a mag 3 scan next week and they want to put a sent in the ureter before surgery. I am under a bgse centre. If you are not then get the gp to refer you. They are quite corned about the kidney so the gp says they will move more quickly. I pee a lot more then I drink, I also swell up which makes me pee more as everything presses on it. It's very uncomfortable. Hope this helps x

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Hi it's been nearly 3 years since they found it and I have seen the guy that found it once since and the doctor dosnt seam woried about it

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Also hate to ask but what swells up as I feel like that to

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Hi my whole abdomen seems to swell up especially when I bleed. This is constant at the moment as I am bleeding continuously since they put me on the progesterone only pill. As I swell up my bladder is squashed so I pee even more often. Sometimes it even makes breathing a little uncomfortable. I would definately get referred to a specialist rather than just regular gynaecology but you may need to keep pushing for it. Good luck x

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Hi thanks don't no if I have swelling or not but I'm on the depo so I don't get my monthly

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Hi "Buddyhorse",

I hear you... and I hope that my reply may offer you some information that could be of help... Endo is a funny disease, and different women have different symptoms, so it's easy for a woman to feel that she is "the only one" with a particular symptom, or type of Endo. Endometriosis is, in itself, a bit of a "mystery" disease, because it is not something commonly talked-about, and it's not well-known. This means that many women who have Endo can feel quite "alone" in their experience, because the average member of the public does not know much about the disease, or has not even head of it!

Well, YOU ARE NOT ALONE! It's great that you are aware of this forum, because most of the women here (like me) are women who have Endo, just like you do. Yes, we all may have different kinds of Endo, and different symptoms as a result - but we are here to share experiences, and to help if we can.

Endometriosis can grow in a variety of different places, most often within the pelvic cavity - but sometimes it can also spread outside. Rare places that Endo has been found include the lungs and skin (which shows just how far it can spread) - BUT remember, these are RARE. Endo is most commonly found somewhere WITHIN the pelvic cavity. The AREA where the Endo grows can have an impact upon the sort of SYMPTOMS that a woman experiences. For instance, Endo near or on the ovaries can affect your menstruation and ovulation pretty badly, causing things like heavy and painful periods, painful ovulation, and sometimes fertility problems. Endo near, or on, the bowel can cause cramping, flatulence, bloating and other bowel problems like constipation or diarrhoea, or pain when full, or when going to the loo. Endo on, or near, the ureters can cause pain in this area, or make having a pee painful or difficult - especially if pressure from the Endo constricts the ureter - this can also cause bladder pain, or feelings of excess fullness.

For a really useful, and comprehensive, guide to symptoms of Endo according to where Endo grows, please feel free to visit the following website, which tells you a lot about symptoms, with a breakdown of symptoms described by location in the body...

endo-resolved.com/symptoms....

Endometriosis is also a disease that grows in different ways - which is linked to the staging of the disease. Staging is usually from 1 - 4, with one being minimal Endo, and 4 being most severe. However, I personally find staging a little confusing and irrelevant, because it does not necessarily describe symptoms. A woman can have only a little Endo but a lot of symptoms (because it's growing in a really awkward place); or a lot of Endo but few symptoms (because the woman is fortunate that the Endo is not growing somewhere likely to cause lots of symptoms). Instead, I feel that Endo is best described as the following:

MINIMAL (or EARLY STAGE) ENDO - this is what your Endo feels like when you first begin to develop it. It also describes Endo that is minimal in that it is superficial (only growing on top of the peritoneum - the tissues that lines the pelvis and covers its organs). Furthermore, this is Endo that has not spread far. The growth will be small in diameter, and can generally be lasered away during Laparoscopy. You may have some pain, depending on where the Endo starts to grow. You may also have symptoms depending on where the Endo grows; e.g. upset stomach (if on/near bowel), or painful sex (if near vagina).

DEVELOPED ENDO - this is the way I describe Endometriosis that women may have had for some time. It is when the Endo growth has spread; either covering a large area in one part of the abdomen/pelvis, or else found at many different locations within the abdomen/pelvis. This Endo may still be fairly superficial, although it could start to penetrate deeper into the surface of the tissue it grows on. Symptoms may be more noticeable, depending on how far the Endo has spread, and what locations it is found in. This Endo may still be treatable by laser/diathermy (heat).

DEEP INFILTRATING ENDO - this is a completely different type of Endo to the above. It is a much more severe form of the illness, and is rarer. This Endo grows deep inside the tissues and organs of the pelvic/abdominal cavity (5mm deep inside or more). It will often form hard, painful nodules within the tissues and organs, and for this reason it can be an extremely painful form of Endo. Deep Endo like this cannot be treated by a basic Gynaecologist because they do not have the skill. It cannot be laser or heat treated; it must be excised (cut out). If you have deep Endo, it is always best to seek specialist care at a BSGE accredited centre.

For information about different stages of Endo, see endo-resolved.com/endometri...

For information regarding Deep Infiltrating Endometriosis, see pelvicpain.org.uk/index.php...

For information regarding BSGE centres go to their website at bsge.org.uk and follow the link to accredited centres.

I'm hoping that some of the info here may be useful to you. Each and every woman will have her own individual experience of Endo, and many of us find it useful to keep a Symptom Diary, in which we record when and where we experience symptoms, as well as what they are. This can help in spotting patterns to the illness, as well as understanding it better.

Wishing you all the best, E. x

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Hi thanks heaps that is very helpful

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I also find it gets worse in the winter or when I have been lifting heavy things it can last for a week up to 4 weeks when I'm on the depo if I wasn't on it it wouldn't go away

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I ment if I wasn't on the depo it wouldn't go away

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No need to thank me - my belief is that NOBODY should have to suffer in silence, or feel that they are alone.

Sounds to me like your Doctor is not the best, or most appropriate. I hear that you are on injections (presumably hormone treatment to induce menopause), but I'd be concerned that this is not the only way (or the best way) to deal with your Endo. PLEASE do consider looking accredited centres if you are not already under one. It seems to me that surgery to remove this Endo might be more appropriate, as opposed to treatment that merely attempts to mask symptoms (and has some nasty side-effects). If in doubt, there is nothing wrong with seeking a second opinion.

I see that you live in N.Z. so I don't know if accredited centres exist there, but surely there may be something similar. If not, at least seek out a specialist Gynae who is competent enough to treat the specific problems that you have. I have noted that you received a reply from Lindle - PLEASE do listen to her. Lindle is generally full of useful information, and provides some sound advice. The links that she has given you may well help. Here are a couple of further ones:

healthnavigator.org.nz/heal...

This one, in particular, may be useful because it provides a link which lists loads and loads of Gynaecologists and Endo Specialists in New Zealand:

healthpages.co.nz

Type the above into a search engine. Then, from the home page, look for the link at the top called "Health Services" and click on this. It will bring up a drop-down box. look for the words "Womens Health" within this and click on them. Then you can scroll down the page to find the bit that is about "Endometriosis". Click on the green words "view all" and it will bring up a list of N.Z. Gynaes specializing in Endo. You can scroll down this list, and it provides profiles of each service or specialist (click on the green words "read more" to bring up detailed info). Some of these specialists even provide urgent appointments. Perhaps you can then find a specialist in your area (you could try contacting a few and discussing your issues to see who could help) which you could ask to be referred to. At least, then, you might have an alternative option to simply getting stuck on the depo, and continuing to experience pain.

I do hope this helps. Wishing you all the best - stay strong. E. x

P.s. sorry the second link did not turn blue. However, it is typed correctly, so if you type the exact same thing into a search engine, it does work. Good luck. x

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Thanks again for your help I'm so glad I posted my question everyone is so helpful and now I no I'm not the only one I'm ringing the doctor today to get my information sent to me and to check my last bp and then I'm going to go on the links and find someone that can help thanks heaps

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Glad to hear this. Collect as much information together as you need. Arm yourself with that, and a list of any questions that you need answers to. Then, go find somebody who can effectively treat your Endo.

By the way - the community here on Health Unlocked are always available if you need a bit more advice or moral support.

Best wishes. I truly hope you get things sorted out the way you want. x

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So yep my bp was up I'm seeing a new doctor tomorrow so I will see how that goes but where I live the doctors are so crap they don't no anything about the kind of endo I have the nurse I spoke to didn't no bugger all about it and she told me so .so I'm hopeing they will send me to someone who will no or I will find someone myself

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You're not the only one. I have endo on the ureters and my right ovary is attached to my right ureter with scar tissue due to the endo.

Since you're having pain in your kidney, I would recommend you see a doctor to make sure that your ureter isn't blocked, if you haven't done this already. As the previous reply from Bethleah referenced, it is possible for scar tissue to block the ureter and cause urine to back up in the kidney. This can damage your kidney function if it isn't treated. Pain in the kidney can be a symptom. Maybe you're already aware of this and have gotten checked, just wanted to make sure. Good luck :)

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Hi thanks I went to the doctor he didn't seam woried I don't think they no mutch about it and I have only seen the doctor that found it once since

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It would be unusual to have ureteral endo in isolation as the ureters are outside the peritoneal space. It would usually be associated with endo originating on the uterosacral ligaments that run either side of the pouch of douglas (one of the most common sites). The ureters run very close to these ligaments. You previously had endo in various places so it seems likely you will have it in the rectovaginal area. With or without rectovaginal endo, ureteral involvement represents a complex presentation that requires the skills of a very specialised endo surgeon.

The progression of ureteral endo is typically insidious as the constriction will initially be cyclical with kidney function recovering in between. Kidney function blood tests will typically be normal for some time. But there is risk of gradual kidney damage. One silent symptom can be hypertension (the kidneys control blood pressure), cyclical at first but latterly all the time if constriction becomes complete. I suggest you monitor your blood pressure and be alert to any raised BP levels. If you are currently being seen by a regular gynaecologist I strongly suggest you seek out an excision surgeon. These links might be useful.

markinsull.co.nz/

nzendo.org.nz/

facebook.com/nzendo

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Hi yes I do have spots of it in other places to and its on my right one it's usually on the left one going by what people say the doctor that found it put me on the depo and it has helped but I still get what I call them as flear ups I saw a doctor 2 weeks ago but he didn't seam woried but I don't think they no mutch about it

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Yes the left is most likely to be involved because rectovaginal endo predominantly affects the left side due to the sigmoid colon entering the pelvis on the left. But clearly there are cases of right or bilateral involvement. If your doctor doesn't know much about it then you need referral to an endo excision specialist as they will be very familiar with it and will appreciate the importance of getting this surgically treated to preserve your kidney.

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Have you joined the NZ community on here? They should be able to advise re specialists there.

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Yes I did haven't asked anything yet so because it's on my right side will the symptoms be the same or different to a pirson with it on the left side

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