New to site and looking for some answers to my Q's........

[T_esis]

Hi all, im new to this site.. You will have to bear with me as I have a few questions to ask in this post. lol.

I have suspected endos and am going in for my 1st lap soon. But with all my symptoms Im pretty sure I have it.

I just wanted to ask you all about your pains, Im quite confused by mine as Im told that the pain is worse with your period, but I find that every month is different for me. Some months I will have alot of pain during my period, other months its after my period and then again sometimes during and after ovulation. And if Im really unlucky I get it throughout the month Do any of you find that you cannot pinpoint when you will get the pain?

Also bleeding- most doctors will say that women with endos have typically heavy periods, well I dont, infact their barely there (only ever on for a day and a half now, and their always late by a week or so.) Anybody else find that this is the case with them too?

My final question is about ovarian cysts. I had a cyst which supposedly has gone down now, I know that chocolate cysts are associated with endos but are simple ovarian cysts also associated with it? as this is what I was diagnosed with.

Sorry for all the questions, as you can imagine I have alot of things still unclear in my mind . Dosent seem to be any good relying on my GP for answers as they seem quite clueless on the matter. .

[jojo777]

Hi there

Well, the best thing is to do the lap and hopefully you will get some answers.

Now, replying to your questions, my pain was more or less like yours, sometimes really bad period pains, usually ovulation pains and the last months almost constant and I was diagnosed after lap with deep infiltrating endo.

My period lasts from 2-4 days and its not heavy at all, so as you see it is possible to have endo while the period is not heavy or long.

And I had cysts too, both chocolate and the typical ones. Having the 'normal' cysts doesnt mean you have endo, it is totally different. (this is what the docs say).

Good luck, push doctors to get your answers, this what I did too, you are the only one you know your body.

Jo x

[T_esis]

Thanks for replying Jo. After reading your experiences, it seems my pattern of pain/bleeding is similar to yours . I'm reassured you've said that as I do think I'm going mad sometimes with pains and things all over the place.Obviously it just confirms to me that my symptoms are more then likely endo related.

Pushing my doctors for any sort of advice would be a miracle. They are not very forthcoming im afraid. They genuinely dont have a clue about it and seem really reluctant to have any kind of in depth conversation. It leaves you feeling a little unsupported, but I will just wait and see what the lap brings. Thinking of changing GP anyway if they dont take more of an interest.

[jojo777]

Could you afford to see and endo gynaecologist private? It might worth to get an expert opinion. I had to change gynae as my first one operated on me and it was a disaster.

If this means for you to change GP then so be it.

We need our life back and doctors that are reluctant to help are not welcome! Lol xx

[T_esis]

Amen to that Jo!! lol, The time when you find out you have endos is the time your going to need a super GP. Not only for great medical care but emotional support too, which Im not getting!! Unfortunately don't have the funds to approach a private gyney but maybe if I can save a little and if im still unhappy I can do just that. Although In some ways no one should have to go to these lengths to get the best care, as we are a welfare state but thats for another post lol...

Have read your previous post and learnt youve just had a lap, I hope this consultant did his job better than the last for you. It must have been very dis-heartening, I suppose I have all this infront of me. oh the joys.!!

[jojo777]

Yes I had to go through a very bad experience with my first lap, my second lap was successful with a great gynae.

I wish the best for you and try to find a good doctor. If you are in London I can recommend a great endo gynae. Let me know

Jo x

[Bez76]

Hi there,

I also have very similar periods to you. Firstly the pain was just immediately before my period, and then as time as gone on it has gone from again just before my period, mid month, during my period, after and sometimes all through. It varies from month to month, but over the last few months up until my recent Lap it has been excruciating. October, was a particular bad month, and just before my period I have never known pain like it in the early hours of the morning. Similarly, I have been thinking the same as I don't have long periods or overly heavy periods. The pain and hormonal emotion is far worse than the actual period itself. I sometimes think what is all this pain about - for a day and a half (max) of bleeding. The joys of being a woman, hey!

I had my Lap on 9th November, and am still recovering and not back at work as yet. I have been signed off for another week, so should be back on 3rd December. I was extremely lucky and although I went through NHS, I somehow through some fluke, got private treatment. The gynae consultant and hospital was excellent and the consultant right from day 1 seemed to really care and know what he was talking about. If I hadn't have been so lucky, I would have gone privately through my work medical insurance, but completely understand that not everybody has that option - I certainly wouldn't be able to afford it without that. Maybe it is worth trying to see if you can be seen at a different hospital, I believe that you do have the right and you may be lucky like me. Like Jo, if you are in London, I am happy to recommend the Gynae and the hospital I went to. For example, I had to go back up on Weds evening to get one of my wounds checked out - just for a check up, I got a private room. A bed, TV - they brought me and my boyfriend coffee. All still NHS but private care.

Before this however, i have spent years and years going back and forth to NHS doctors, with nobody taking me seriously. Once female doctor actually told me to go and do yoga, and was more interested in the jumper I was wearing. It is only when I went to the doctors in August saying the pain is pretty much constant that they had to do something and send me for an ultrasound - so this time around, I can't complain, but I have been complaining about this for the best part of 12 years to get to this point

I do hope everything goes well for you, but do push for a different doctor/consultant if you aren't happy. After all you should have every confidence that they are doing the best for you.

Take care.

Nic x

[hayls]

Hi

I agree with all of the above! I have been diagnosed with severe Endo and am lucky that i have a super GP and gynae (although I am another one that had to switch from Nhs to private to get a gynae that knew what he was talking about)

Answering your questions though - like you, my pain can be before, during or after my period, over ovulation or all month, sometimes theres a pattern to it for a couple of months and then goes a bit all over the place but over time it's consistently awful for at least 1 day during my period and bad for 2-3 days after. Some gynaes believe it's only Endo if you only get pain before your period - that simply isn't true as many of the women on here will tell you!

Bleeding - you're right that not all women with Endo have heavy periods, just because yours are light doesn't mean it can't be endo, but I would take it as a bit of blessing for now as lengthy periods is one of the main things that makes me so tired.

Cysts - I don't think there is any proven connection between simple/typical cysts and endo but a lot of women with endo seem prone to them. My doctors found simple cysts on both ovaries before my lap and one gave me a lot of grief and it looks like I could have another one at the moment. It's all things effected by our hormones so it's not surprising if we also get "normal" cysts as well and they are very common. There was a post on here a few months ago where someone asked about a link with Endo, it might be worth searching for it?

If you have any other questions just ask, we are all here and together we've pretty much seen everything!

Hayls x

[Titti]

Hi everyone, I'm a bit surprise about one thing: why do you have to go in a lap to know if you really suffer from endo? Isn't it enough an ecography? Endo cysts are quite typical, they have a typical structure. I've been diagnosed after one ecography, then they removed my cysts surgically. I take the pill since then. I've never had heavy periods or pains since they diagnosed me at 40. Now I'm 47 and I'm OK.

Hope you'll be fine soon.

Titti

[jojo777]

Hi Titti

Not everyone with endo has endo cysts, hence no scan can show anything at all. I had ultrasound, CT, MRI and cause I didn't have endo cysts nothing else was shown.

But when I had the lap endo was found around my right uterosacral ligament that was unseen in all scans.

Jo x

[flo_IarFachYrHaf]

yes, pain all over the place. I've endometriosis for 20 years [or more]. Often pain after period worse.

I was delighted to find that transvaginal scans could be used to detect some endometriosis - as I've previously had laparoscopies. Not delighted to find I have more endometriosis...hence joining up here. I shall post a question and look around as I have until 19th Dec to decide - mirena coil, ovaries removed by laparoscopy [unless too stuck to other things] or TCRE - gynaecologist seems to hint that ovary removal the best option.

He thinks my heavy periods might be not just down to endometriosis. I am exhausted so something has to happen

That leads me to support and knowledge from GPs and gynaecologists: variable. I refused to return to first gynaecologist 20 years ago, she was awful. Then had a brilliant amazing man. This one new. My current GP excellent [I do have multiple health problems]. The head of practise ignorant, so ignorant that I refuse to see him again "you can't get pain from endometriosis anywhere else but in the pelvic area"

If you don't feel supported or well informed see what you can do about changing GP. What about gynaecologist? It's hard to push for things when you feel confused or/and unwell.

best of wishes

[maydog]

Get your consultant to take photos of your endo so that they are in your notes . Ask questions . Get the grade of your endo. Be strong, be determined. I have had endo since I was early teens and was poo poo'd for years by my GP. Please learn by my mistakes. I am 44 now with 2 fantastic adopted children, but there is a lot of help out there now ASK for it x and consider the mirena coil .