Does endometriomas, mean you have really bad endometriosis?

[Crystalee]

Hi all,

I'm really worried as to understanding endometriomas and if they them means that you could have stage 4 endometriosis? Does it mean your endometriosis is bad?

[Suzied2b]

Have you had a laparoscopy to diagnosensure your endo? As that is the only way you'll know how bad your endo is. And some who have severe endometriosis can have minimal symptoms. Those with not much endometriosis can be in severe pain.

I suffered badly everyday, but on doing lap they only found it in one tube and in between my uv fold. I had a cyst firm last month and was in excruciating pain when that burst. Was bed bound for 4 days.

Everyone is different

Xxx

[Crystalee in reply to Suzied2b]

No lap yep hopefully in about 6 months time!!

I don't have much pain but currently have a 3.6cm endometrioma on my right ovary.

I just wanted to know if this means I have bad endometriosis else where?

Could I have little pain and really bad endo?

[Fabbird in reply to Crystalee]

Hi, my understanding is that if it's on your ovaries they consider it stage 3 (that was how i started). But that doesn't mean you've necessarily got it elsewhere. As Suzie says, until they do a lap they can't know exactly where it is. Sorry to hear that you have to wait six months.

[Crystalee in reply to Fabbird]

Oh really, well I know there's one endometrioma on my ovary it's a long and anxious wait

[Crystalee in reply to Crystalee]

So did you have an endometrioma on your ovaries and they classed it as stage 3? Or did you have it else where too?

[Fabbird in reply to Crystalee]

Yes, I had one on my ovaries and they said that meant it was stage 3. It's gone now, thanks to the Mirena.

[Suzied2b in reply to Crystalee]

It is a possibility. Again though everyone is different and everyone's pain threshold iso different. I would rather give birth everyou month than deal with my endo pains daily.

Have you tried the prostap injections? I'm on my 2nd course of them and it's the only thing that relieves themail pain. So my next course of action is to fight to get my ovaries removed as that's where my problem lies.

Xxx

[Crystalee in reply to Suzied2b]

I honestly have hardly any pain, that's why I'm scared I probably have stage 3/4 but with hardly any pain!!

I hate waiting for the operation as I know it can get worse the longer I leave it

[Suzied2b in reply to Crystalee]

I had a lot of pain and been out of work for 9 month because of it. I very rarely leave my house and haven't been able to do anything with my kids in the holidays and it's literally made my life hell. And they said they only found it in one of my tubes and in the uv fold. Fingers crossed your lap gets done soon. Xxx

[Crystalee in reply to Suzied2b]

Oh wow you poor thing that's terrible!! See I hardly have any pain, I'm scared to the fact that I have to wait 6 months and this could potentially get worse

[Suzied2b in reply to Crystalee]

What pain relief are you on? And are you on any contraception?

They say contraception helps. I had the coillness fitted in may after my gp banging on how amazing it iseems and really helps with endometriosis sufferers. I never fancied the idea of it, but after the oral contraception doesn't agree with me and gives me suicidal tendencies., I figured I'd give it a go. I had that removed yesterday as I had only had 1 pain free day. And I'm now back on my prist5injections. I love them it's the only thing that works for me.

Maybe these are options while your waiting for your lap xxxx

[Suzied2b in reply to Suzied2b]

*prostap injections

[Starry in reply to Crystalee]

There are different types of Endo and different severities.

This describes the different types simply though Im not sure about saying any one type is the most painful as ovarian cysts can be agonising in a different way. It depends most on how your nerves are affected I suspect.

miriwomen.com/blog/did-you-...

fertilomat.com/types-endome...

Like you, I hardly had any pain, but developed chronic fatigue and dyspareunia. It is a myth about pain ( and heavy periods) and it's been weird and a bit frustrating when everyone tells you you must be in agony but you're not at all really. I really feel for the ladies who are, the CFS has been hard enough to cope with.

Though tbf I suspect I maybe have had more pain than I realised, it was just very infrequent and obscure so I never associated it to be one problem Maybe my normal period pain is not as normal as I think, who knows!. In the 2 year run up to diagnosis I was fainting generally going to the toilet during my periods say 1 in 5 and I had terrible back pain which I thought was a disc bulge problem but was in part endo.

I was diagnosed with deep recto vaginal endo a year ago after I developed bladder issues and a lump was found behind my vagina ( that explains the Dyspareunia!) and had my excision surgery 7 weeks ago. I also had a small ovarian endometrioma, the two types can coexist so there are certain common patterns..

[Crystalee in reply to Starry]

Oh wow and thank you, may I ask what is deep recto vaginal? Is that part of endo? I'm glad you had surgery and how did that go? Did they have to remove any ovaries or anything? Are all your reproductive organs still functioning?

[Starry in reply to Crystalee]

Deep is short for deep infiltrating as opposed to superficial ( on the surface) and refers to how many layers into the bodys membrane its gone. More than 5 mm is deemed severe in the NHS spec.

Recto vaginal is a specific type of endo which tends to be nodular and fibrous and often hormone resistant so one of the harder types to treat. It can be asymptomatic or present non standard symptoms (diarrhoea on menstruation or constipation, back ache,) for long time and is hard for general gynaes to spot during laparoscopy, making it harder to diagnose.

Recto vaginal also describes it's location typically behind the vagina in the small cavities between the rectum ( lower bowel) and vagina or cervix. It was when I read the article on RV endo subtype here I put all my diverse and odd symptoms together and it suddenly made sense.

endopaedia.info/subtype.html

[Starry in reply to Starry]

My endometrioma was small at 2 cm and easily treated during my diagnostic lap, they didn't even wait till my main treatment op.

[Hidden]

I had zero pain, no clue that anything was wrong, but had laparoscopic surgery because I became infertile. They found severe endo throughout my abdomen. So you could have zero pain, like me, and have a large amount of endo. You'll just have to wait until your surgery to find out.

[Crystalee in reply to Hidden]

Oh wow, did you have any surgery to remove it?

[Hidden in reply to Crystalee]

Yes, it was during exploratory surgery for infertility that they found the endo. They removed as much as they could from my uterus, Fallopian tubes and ovaries while I was under. Really pleased I went ahead with the surgery.

[Misabel]

Hi Crystalee, just wanted to say please don't panic about the endometrioma. I was desperate for an answer to this exact question before my lap, as a 4.5cm cyst was seen on my right ovary during a scan. I was sure it meant the worst, but after my lap and cyst removal my consultant described the cyst as 'small' and my endo as mild/moderate (he said uk doctors don't tend to classify in numbered stages). It was on both ovaries but not extensive in other places and they removed it all. I really don't think there is any way to know before your lap, but from my experience an endometrioma does not have to equal severe endo. Hope this is helpful!

[Crystalee in reply to Misabel]

Thank you for clarifying that i just keep thinking that endometrioma means I have very bad endometriosis everywhere else

I have to understand that is not the case, but it could be!

[Misabel in reply to Crystalee]

Absolutely, it's the not knowing that is so difficult and the ridiculous waiting time for surgery doesn't help - I also waited 6 months for mine and was terrified of things getting worse while I waited. I actually saw a consultant privately just after the first scan as I was so worried about waiting. He strongly advised against private surgery as in his opinion the wait was not a problem (at least physically) and it would not be worth the expense. That made me feel a lot better as I felt my GP was clueless and i didn't trust her at all! The waiting really is hard but I found it got better easier as I came to terms with it xx

[sanchia46]

Yes stage four endo is severe.

[Crystalee in reply to sanchia46]

Does that mean I have that? By having an endometrioma on my right ovary?

[sanchia46 in reply to Crystalee]

Did you have a laparoscopy?

[Crystalee in reply to sanchia46]

No not yet, 6-9 month wait

[sanchia46 in reply to Crystalee]

You can't be officially diagnosed until then. Ultra sound scans don't show up endo properly

[emilywilson]

Endometriosis usually has four stages. First is Minimal; In minimal endometriosis , there are small lesions or wounds and shallow endometrial implants on your ovary. Stage 2 is Mild, Stage 3 is moderate and Stage 4 is severe. Stage 4 is also called as cancerous stage. These endometrial cancers have grown inside the bladder or bowel. This stage also includes cancers that have spread to the liver, lungs, omentum or other organs. If endometriosis is not treated the scar tissues can bind any of the pelvic organs to one another and may sometimes cover them entirely. Many women who have endometriosis experience few or no symptoms. However, in some women, endometriosis may cause severe menstrual cramps, pain during intercourse, infertility, or other symptoms.

[Bdgjdjd in reply to emilywilson]

Stage 4 is cancerous stage !!!!!!!!

From where you get this information

A lot of people have it on their bladder and don’t have cancer

[JeanOsborne in reply to emilywilson]

Stage 4 is not cancerous.

[Lottie80 in reply to emilywilson]

STAGE 4 IS DEFINITELY NOT CANCEROUS

[lily96]

Hello good luck and best wishes for you, hope to get 100% result and may all your wishes come true. Endometriosis occurs when bits of the tissue that lines the uterus (endometrium) grow on other pelvic organs, such as the ovaries or fallopian tubes. Outside the uterus, endometrial tissue thickens and bleed, just as the normal endometrium does during the menstrual cycle. If a woman is facing endometriosis it is possible to give a reliable indication of her chances of having fertility problems. It is generally believed that 60-70% of women with endometriosis are fertile. Furthermore, about half the women who have difficulties with getting pregnant do eventually conceive with or without treatment. Women with endometriosis have greater risk of pregnancy complications, including miscarriage and ectopic pregnancy. A recent study has found that women with endometriosis are more likely to experience complications during and after pregnancy including an increased risk of miscarriage and ectopic pregnancy.

[paulinadave]

Hi there. What problem actually do you face? Endometriosis is dangerous for sure. Still it depends on your situation. What about your treatments? Are you on medications? Or injections? How are you feeling now? The danger from endometriosis goes directlt with the situation and all consequences. Kindly tell me your situation. What are you upto? I wish you could have best suggestions here. I wish you all the best dear. Take care of your diet and health.

[nancybolt]

Hi, I am sorry to read about your pain. I want to ask you have you had a laparoscopy to diagnose sure your endo? As that is the only way you'll know how bad your endo is. And some who have severe endometriosis can have minimal symptoms.here I am sharing some information regarding it, hope it will be helpful. First not all conditions and extent of endo are same. Severity may vary, not all infertilities are due to endo. Always take the advice of your doctor as they know your conditions better than anyone else.

[emilywilson]

Hey! I after years of hearing that I wasnt going get my child, I finally got the news from my doctor that my surrogate mother took to the procedure and finally conceived! I dont post here but I was so happy about this, I had to share it . I am an infertile women and have been trying for years to have a kid of my own. The mistake I made was that I didnt talk to a doctor before trying to conceive. I think I have definitely learnt from my experiences that that is possibly the biggest step you can avoid, if you want to make your conception journey much much easier. Also be vary of the fact that certain techniques dont apply to certain people. For example, hormone therapies only exaggerated my condition while I was trying to conceive and it cost me months of trying and a decent amount of resources as well. Also dont not take my words as medical advice that applies to everyone. They do only to me. So, after I tried all the traditional techniques, I started looking into surrogacy. The doctors confirmed that to be a viable option for my condition as well. My husband and I talked about it and then started researching. We found this clinic in ukraine through youtube and saw their videos. We learnt a lot and our impression of how good they were was comfirmed when we went into the procedure. The clinic staff and doctors took care of me, more than I had seen from other places. After finding our surrogate mother, through the clinic's database, we were told to wait. We just got the news, as I mentioned and I couldnt be happier. I hope you guys take this as an inspiration or source of hope. Thanks for reading Cheers!

[crzk]

Hi Crystalee,

i have a very similiar case with u, 3.9 cm endometrioma on my right ovary. It hurt so bad before, during, and after my period. And rarely on other day. My doctor said lap is not necessary yet and i can still continue TTC (I've been married for 3 years but still haven't pregnant yet).

I still worry about how bad my endo is. And if it's effect my fertility. Feels like i can't wait to have lap, just to be sure of everything.

It's been 2 years since ur post. Have you had a laparoscopy yet?