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Not endo

(26 Posts)
Christinedonna Mon 09-Feb-15 12:37:31

Has anyone been through the experience of having a laparoscopy to investigate the possibility of endo and been told everything looks normal? I have endo like symptoms, trouble conceiving, terrible pains, irregular periods..the pains feel like severe period pains but pretty much all month long. I had my laparoscopy and they said everything seems normal, clear tubes, normal womb, healthy ovaries and no explanation for my problems. Has anyone else been through this or currently going through it? What was the outcome or what are your next steps?

Pat1ence Mon 09-Feb-15 13:24:43

My post isn't very helpful but may make you feel less alone! I had a lap and did have a small amount of endo treated. My FC is highly regarded and he told me he had removed it all, for definite, and there's no way it is causing the symptoms I still have which are very similar to yours.

He did say I have pelvic congestion syndrome which could be causing the pain but it seems too timely for that. I can tell what kind of pain will happen depending on my cycle day. I thought pelvic congestion was more random. Also that wouldn't explain my long periods and irregular bleeding starting 3dpo.

IBS has been suggested but the pain is very localised, it doesn't feel like my bowel! It's a burning rather than cramping and always on the right side. Some days it feels like my uterus will fall out!

I'm over two years down the line, still have all symptoms. Some months much worse than others and ovulation is always painful. Still no BFP. I have convinced myself it's cancer, a chronic infection and other things but these have been ruled out. Still none the wiser, frustrated and fed up.

I'm interested to know if anybody else suffers like us with no apparent reason.

Christinedonna Mon 09-Feb-15 13:40:57

I was also told that more often than not when it's not endo it's the bowel. As much as I'd like to trust what someone with medical knowledge tells me, no one knows my body but me and I don't believe it's anything to do with my bowel. I feel it has to be something gynae and my infertility (I've convinced myself of this) and other problems are linked! Being told "it looks normal so that's good" is not good! I'm left with no answers, I'd rather be told I have a problem (which I know I do) and what if anything I can do to try and improve it, than be told I'm fine

Pat1ence Mon 09-Feb-15 14:08:01

Agreed. My cycles seemed ok 4 years ago. I then had the implant, put on loads of weight and felt off so bad that removed and started on Cileste pill. Then all the problems started. I'm not sure if it's a hormone imbalance (seem to have a lot of symptoms of hormone problems) or a problem caused be BV which was discovered incidentally 3 years ago or ???
It's extremely frustrating. I've spent hours googling, asked all my friends about their cycles, listened to some hilarious theories from doctors... Still none the wiser. I used to be pain free. What changed?! I'm like you, I know my body well, it's very difficult to explain to a male gynea what being acutely aware of your right ovary and uterus feels like! I'm sure they think I'm exaggerating.

Christinedonna Mon 09-Feb-15 14:28:57

It's unbelievable how clueless some "doctors" are. At first I thought it was pcos and was told "you don't have that, if you did you'd have a beard" I said that my aunt has it & other gynae problems and was told "that has nothing to do with it, it's not hereditary" which unless I'm mistaken it's actually very common for it to run it families? I had a scan to look at my ovaries and the woman told me there and then "your right ovary is covered in cysts, that definitely looks like pcos" and when I discussed it with a doctor in a follow up I was told it was in my notes that everything was perfectly normal, they just appeared to be "ovulation cysts". I was sent for blood tests and turned away twice having been told I have to be on my period for the blood test to be accurate and was stupidly asked the question "when do you think that will be?" Well that's half the reason I'm here love! At my laparoscopy I woke up and was told the findings of the procedure within about 5 minutes of consciousness, had two nurses arguing either side of me and sent home within an hour of waking up despite not being able to eat, drink, stand or walk and I was basically kept awake so I could leave. Very unprofessional and incompetent treatment so far! The most frustrating thing though is to be told "you could definitely start a family if you wanted to"..that could not be further from the truth

endosucks Mon 09-Feb-15 14:29:53

Has anyone been through the experience of having a laparoscopy to investigate the possibility of endo and been told everything looks normal?

Yes, I have been through this and know all too well how incredibly frustrating it is.
Have you had your ca125 measured ? It can be one of the indicators of endometriosis as well. A combination of my ca125 being much too high and the horrible pains being related to my irregular menstrual cycle led to the diagnosis of endometriosis. I was given hormone treatment - medically induced menopause - which made the pains disappear and the ca125 go down to almost normal. I'm currently having a break from the hormone treatment and the pains are back. Don't really know what to do next.

Christinedonna Mon 09-Feb-15 14:36:44

I've never heard of this before? If it wasn't for mumsnet Id be lost I swear! I was pointed in the direction of endo via women on here, god knows when a doctor would have actually plucked up the idea on their own

Pandsbear Tue 10-Feb-15 13:59:51

Hi OP do you know if in your lap they took any samples for the lab to confirm one way or another or did they just have a visual look? You can have tiny amounts of endo causing a lot of pain. Do you know if the surgeon doing your lap was an experienced endo specialist or just someone from the gynae team as that can make a big difference as well.

Ca125 blood test is sometimes elevated with endo as it measures levels of inflammation in the abdomen. I had high levels and it was because of an endometrioma (I was worried initially with rising levels but the gynae said not to be and that he was sure it was indicative of endo in me - he was right)

And Pat1ence- if your surgeon did not excise all the endo (and not just laser or burn away surface deposits) then there is quite likely endo still there, which would explain why you are still suffering. Can you have a second opinion/is there someone else you cold be referred to?

WillBeatFebruaryBlues Tue 10-Feb-15 15:04:25

Op can I ask what your right side feels like, can you feel anything there?

By the way re PCOS, docs are very poor at diagnosing it. I would get second opinion on that and no, you don't necessarily have excess hair, its one symptom only!

WillBeatFebruaryBlues Tue 10-Feb-15 15:04:52

Does endo feel hard, I have a hardening on right side, feels like ovary too.

AttilaTheMeerkat Tue 10-Feb-15 15:06:47

I've been thinking about your post Christine and I would think you had a general gyane surgeon operate on you rather than someone with a specialist interest in endometriosis. Not all gynaes are good and I have a feeling that the surgeon missed any endometriosis. It does not always present in its usual fashion.

I would certainly complain to PALS about your treatment post op; they should have given you another appointment before the surgery commenced for say a week later to discuss the lap op findings. You are not by any means the only one to have been told whilst you are in the recovery room. At the very least its bad practice.

Your irregular periods are a separate issue and perhaps caused by something like PCOS.

Pat1ence; many women also get told "IBS" when its actually endometriosis. It can and does recur; it may be the root cause of your symptoms now particularly with regards the pain and bleeding. I would seek medical advice and find another gynae consultant to work with, you really need to see a gynae specialist with a specialised interest in endometriosis. Do not be fobbed off, you will need to be persistent in order to get answers.

Christinedonna Tue 10-Feb-15 18:11:53

To my knowledge she was a gynaecologist..that's all I know. She said before that she'd take pictures etc, then when I woke up said there was none so I would assume it was just a look. I've been told to go back to my doctor that will "most likely" refer me to a surgeon to look into it being something else. My right side- unless it's gone unnoticed doesn't differ from the left. It just feels like period pains & cramps, some times it's shooting pains or cramps really low down but in general it's in my lower abdomen and at it's worst it just takes over my whole stomach and I can't really pin point one place that hurts as it's so agonising all over

PancyFants Tue 10-Feb-15 18:45:55

I'm interested to hear others have specific right side pain. I do have endo but before it was diagnosed I was admitted through a and e 3 times for suspected appendicitis as the pain is so specific In that one area.

I had a lap and significant endo removed and I was pain free for maybe a year or two but in the last few moths that right sided pain is back, not as severe but pretty constant for days at a time. I'm not on any treatment as hormones really don't agree with me, well I haven't found one yet but think I might have to bite the billet due to the right sided pain. It's in such an area that I could literally draw a circle right round it

WillBeatFebruaryBlues Tue 10-Feb-15 18:59:53

I'm not on any treatment as hormones really don't agree with me, well I haven't found one yet but think I might have to bite the billet due to the right sided pain. It's in such an area that I could literally draw a circle right round it

Funny yuou said this - as I literally drew a circle round mine to show doc where hard was

PancyFants Tue 10-Feb-15 19:08:00

I offered to draw round it! Mine is a pretty much finger's length to the right of my belly button then a finger's width down grin

PancyFants Tue 10-Feb-15 19:09:20

Sorry a finger's length down. Sort of in my pant/pubic area.

WillBeatFebruaryBlues Tue 10-Feb-15 19:25:28

That's pretty much where mine is too. I just finger measured it.

My area is hard ish with a bally bit there, I am waiting for a scan right now. Intermittent pain, nothing bad am just worried about the lump.

APotNoodleandaTommy Tue 10-Feb-15 19:49:33

I had right sided pain too

May be incoherent as had laparoscopy yesterday. It was my third. This time I went private and saw an endo specialist. He excised rather than lasered. I can feel a difference already despite post surgery pain.

What he mainly found was masses and masses of scarring from poorly executed laparoscopy 1 and 2. Including internal organs stuck together with the damned stuff. I will be fighting that damned hospital to do what I can to ensure other women don't have to go through this.

Definitely research endo experts in your area and not general gynaes. I desperately wish I had done 4 years ago and I wouldn't be in this mess now.

Pat1ence Tue 10-Feb-15 19:54:13

Mine is the same place! Between periods can feel like an ache/stab. During period feels like a fireball, radiates down my right leg and up my body. Ovulation feels uncomfortable for days, like I can feel the follicle as if it were a golf ball, then an explosion followed by intense throbbing very low down which renders me immobile for up to an hour. I also get pain in my back in exactly the same place- opposite the front. That can feel like a stab/ache/searing pain. It's miserable.

My pain never went away after the lap. I stopped the pill at the same time to TTC so things have remained this way for two years. It's exhausting and depressing. My gynea is now my fertility Dr and will be taking us through IVF so don't want to jump ship at this stage. A successful IVF would put my endo to sleep, as it were, so I'd rather than than another lap at the moment (he did offer to do another). My latest blood results show my thyroid levels are odd so IVF will be postponed unfortunately. I also had treatment on a cervical ectopy recently as on hysteroscopy my luteal phase bleeding was shown to be coming from that (womb looked clear and perfectly healthy). It didn't work. Brown stuff/bleeding as usual this luteal phase. Just before it began I had a bad day if right side pain so it may well be some kind of hormonal/endo related thing that 'triggers' my ectopy to bleed. Seems like one thing after another.

Christinedonna Tue 10-Feb-15 20:07:34

Has anyone been told they're fertile/have no reason not to conceive and had 0 luck?

Pat1ence Tue 10-Feb-15 20:28:32

Me! Apparently they're flummoxed as to why not.

WillBeatFebruaryBlues Tue 10-Feb-15 20:47:59

How odd all pain is right hand side.

Christinedonna Tue 10-Feb-15 21:11:26

Pat1ence how long have you been trying?

Pat1ence Tue 10-Feb-15 23:02:19

Two and a half years. Ovulating pretty much every month.

RockinD Wed 11-Feb-15 21:06:09

I do think sorting your thyroid out must be a priority for you and then the rest will follow.

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