Endometriosis problems

[madhairday]

Bit of a tmi one this. I've had heavy periods for years, and a few years back went for a scan and was told I had mild endometriosis and a couple of small fibroids. They tried me on the mirena coil but I had constant bleeding and other problems, tried it for 6 months and it got worse so came off that.

Things have been gradually worsening, to the extent that I am bleeding for around half the month. For eg this month I started spotting on 15th, heavy bleeding on 18th, went off again and heavy again 20th-27th, stopped, but yesterday heavy again and this morning. The pain that goes alongside it is substantial which I manage with codeine and paracetomol and hot water bottles. I have significant health problems so this is not helping, I'm feeling drained and exhausted all the time (which is a symptom of the other thing but this may be contributing) Oh I get quite a few clots as well with the heavy bleeding, and spotting through the days I'm not bleeding is not unusual.

Just wondered if anyone has experience of this and other treatments. dh reckons they should 'whip the whole lot out' (not having any more dc) but this seems extreme at my age. If not hormonal treatment, what else is there, because this is getting daft.

Am seeing my gp about it soon but wanted to ask for experiences and advice here too.

Had all of this, yup.
Consultant treated the endo with a radical plan involving Synarel and add-back hormone therapy, which pushed me into a temporary menopause but it worked.

Then later problems with Mirena etc that led to me bleeding continually for several months were recently resolved with a Novasure endometrial ablation thingy that seems to have finally done the job. No pain, no bleeding, it's like a miracle...
Might be worth asking about those sorts of things.

Haven't heard of that amber, will look into that, thanks :)

Bump

Hyst is not usually recommended always for cases of endometriosis because it can recur post hyst (particularly if endo is cited in the intestines or areas other than the uterus). You would certainly be put into surgical menopause if a hyst was done as the ovaries would need to be removed at that time.

You need to find a consultant gynae with a specialist interest in endometriosis (not all gynaes are up to date on endo by any means) to discuss the various options open to you.

Have a look at www.endo.org.uk as well as this is a useful website. I would suggest you educate yourself further re endo as knowledge is power and this can be helpful when it comes to making treating decisions.

Thanks Attila. Will have a good look through the website. You're right, I've found time and again with my lung disease that I need to be educated about it as many doctors aren't up to date (it's fairly rare) and I end up educating them Knowledge is definitely power.

Mad ... first of all, just want you to know you are NOT alone.

Right now...

Number 1 - you must, must cant stress enough get your Dr to get you referred to a Endo specialist - not just a gynocologist. I found mine by as Attila said by going onto Endo web site and asking who lived in Notts area and who they saw...3 people came back with the same person and raved about them. I then went onto www.drfosterhealth.co.uk/consultant-guide/ you can search for a specialist in your area.

I then went to my Dr and asked to be referred to this consultant - most do private as well as NHS clinics...if you cant wait go private usual cost os around £120 for 1st consultation then IF you need to be treated, surgery etc... you CAN ask them there and then to see them through the NHS, mine
actually sorted it then and there! Some even do NHS clinics within private hospitals

I think its your fibriods thats causing the bleeding...endo well for me the pain is that bad it makes me feel as if Im going to pass out, I have to sleep off the pain usually 3-4 hours at a time before I feel better again...but do feel that its the fibriods.

Dont be fobbed off by GP go in well prepared, with the consultants name - I see mine the other side of town so again you have the choice to see the consultant at whatever hosp you want.

Let us know how you get on - remember youre not alone, I totally understand how you feel

Thanks so much dillydally :) Yes I get that shocking pain sometimes too, can occasionally feel like I've gone into labour again, perish the thought! Seems important to ask for an endo specialist, will definitely do that, cheers.

I had endometriosis some years ago and had it lazered away. Recently I have been spotting on day 15 and then having spotting on and off til I start my period, early on about day 24. Is this a side effect of endo, or could it be something else. I have also been having hot sweats the week before my period so thought that maybe I was starting perimenopause (I am 40).

I think they are lots and lots of "symptons" for me its always around period time...endo is deposits outside of the uterous so when you have a period the blood basically clings onto these areas.

For me I have pains around ovulation time then when my period comes it always the 2nd day of my period that I can the horrendous pain...after a couple of days it settles. Sometimes the pain comes every other month but my consultant said its probably because it bad on the right ovary so makes sense sort of.

In a nutshell I was in early days sent to a general gyney, she booked me in there and then for surgery...had a laporocapy (sp) this is the only real way of identifying endo - anyway to cut a long story short the notes said the surgeon "Washed the area out" only discovered this when the pain came back 6 weeks later - I then did my research, found a specialist and he read the notes. He gave me options surgery isnt necessarily the option and doesnt always clear endo. Anyway he believes in excision/cutting the endo out rather than laser.

The endo site is fantastic....check it out, when I read some of the stories I actually thoguht well I dont have it that bad as some suffer everyday

Thanks :) I wonder how the gynae doc who did my scan dx'd mild endo then if it can only be dx by a lap...hmmm, sounds a bit odd that he'd say that? Will be definitely getting a proper look now.

Have had a read through the site. It's really helpful. Some on there have so much suffering, much much worse than I am, puts it in perspective really.

Was diagnosed with endometriosis four years ago. A lap confirmed that I have adhesions to the bladder and bowel. Tried having Zoladex injections for six months with a view to laser therapy - but this was unsuccessful. My gynae wanted me to have a hysterectomy, but because of adhesions I would have to have Zoladex injections for six months prior (side effects of this are horrendous) and have to have the bowel surgeon on hand 'just in case'. This put the fear of god into me and I therefore didn't want to have the hysterectomy. Was then put on Cerazette which helped to relieve heavy bleed and pain. Gynae wanted me to try the Mirena which I had fitted 7/8 weeks ago, but heavy bleed and pain has returned. Also having side effects (weight gain, insomnia, mood swings etc). Asked to have coil removed 2 weeks ago, but they can't find it - so am now waiting for a scan to locate and am not sure yet how they are going to remove it.
Feeling that my options for treatment are running out and that a hysterectomy may be the only solution. Have a six year old and don't want to go through such a big op yet. Has anyone had similar? Any advice would be appreciated.

Hi elliep,

www.endo.org.uk is a good website and they also have a phone helpline and forum page on there too. Some of those women too have been through the wringer like you have.

You really do need to find a really good gynae consultant surgeon, cannot stress that enough.

Drug treatment on its own does not touch adhesions once they are formed, the usual way adhesions are treated is surgical removal.

I would be wary of the hyst as endo can recur post hyst also. Also your ovaries would need to be removed as well when the hyst is performed thus putting you into surgical menopause. If the endo is also in the bowels then a hyst would not address that problem.

I would seek a second opinion and find the most experienced surgeon you can; not all gynaes by any means are up to date with their knowledge and expertise at trying to resolve complicated endemetriosis cases. Dr Foster is also a good website re surgeons.