First appointment

[donna1904]

Just been for my first appointment and didn't even get seen by the doctor mentioned in my letter. I explained my groin pain, irregular periods, very heavy and painful periods and how they affect my life. She basically said that the only way for endometriosis to be diagnosed is to have keyhole surgery but that it would be dangerous for me due to my weight. Then she got me to swab myself there and then to test for STIs! She also said my hairy chin could be PCOS and said she would write to my GP to advise me being sent to a dietician as this will help with my hairy chin and weight, and gave me a prescription for the mini pill and I will get an appointment for a scan in the next few weeks. After the scan I will go back in about four months to see how I'm getting on with the mini pill....does all this seem right? Will the scan show up endometriosis? She made it sound like it's all down to my weight and that it's not important for me to see if I have endometriosis as I haven't got a partner and therefore not trying for a baby yet. Maybe I'm just hormonal but it all really upset me. Any advice anyone?

[Hidden]

Nope, welcome to our world where they fob you off to someone else. The only way then can see endo on a scan is if there is massive scarring and displacement of your insides. The scans are usually to rule out other "possible" things. Mine found I have chronic cysts, but kept telling me cysts don't hurt as much as you are describing. Yet refused to think endo. Instead I got a colonoscopy, my stomach checked, scans for possible chronic appendicitis, and finally was told the pain is all in my head and you should see a psychiatrist; because cysts can't hurt that much. I went through 4 or 5 gynos (can't remember all of them now) and 3 family dr.'s, and 2 laps before all of this got settled. Oh, and I now have stage 3 endo; that should have been caught nearly 7 years ago when all of this flared up so badly that I started going to the doctors in the first place.

The pills are a common step. They are trying to alleviate the pain for you by regulating the cycle and how much blood is discharged. Ask them if you can go nonstop on the pills to NOT have a period to see if that helps with any of the pain. You most likely will have to try a number of varieties of birth control. I spent a whole year trying birth control of different brands, to come to the conclusion that I cannot tolerate extra estrogen in my body.

As for the losing weight...... I wish you the best of luck, because I want to exercise so badly ( as in walking in the woods and such) but my endo spots make me regret it almost instantly. I actually have to schedule walks around my days off, so that the next day I am off from work and can whimper at home from the pain. Perhaps you just need to lose a tiny bit of weight to be under what they consider unsafe for surgery. A bunch of ladies on this site swear by the gluten free diet, so perhaps that may work for you as well.

[donna1904]

Oh God I'm so sorry to hear what you have been through! Seems like all they're good for is fobbing people off!

I'm sick of being fobbed off, it's actually getting me down! I have had this pain for ages and the doctors just kept making me do urine samples! I will just have to see how the scan goes now. I will deffo look in to the gluten free diet, anything's worth a try

[Impatient]

It's tricky dilemma -yes you need a surgery - but you need to be as safe as you can be too. The eight limit for laparoscopy is roughly 18 stones, but it's where you are carrying that weight that is the issue. If it was mainly bum and thighs but you still had a trim waist the the lap camera and equipment can still be used and your tummy weight will not be such a problem when it comes to blowing the tummy up like a balloon with gas so the surgeon can look around for endo.

IF you have endo - and it sure is a possibility, the tummy fat can obscure older endo, and make finding new endo trickier. Tummy fat is also an excellent production and storage warehouse for oestrogen...the one hormone endo needs to feed on to be active. It can also make the stomach too heavy to take the pressure of gas needed to pump up the tummy like a balloon in order to look around inside and with endo they have to be able to explore the whole of the tummy organs as much as possible. It's not like an appendix op where they can target in on a specific single organ.

For many reasons if tummy fat specifically is the problem - you must get to grips with it and specifically target that region of the body. Invest in a Hula Hoop - its the best tummy exerciser there is. In the privacy of your own home you can Hula Hoop your way round the house, or while watching telly, brushing your teeth. Grab every opportunity to work off the fat reserves in the tummy with that type of targetted excercise, as well as reducing meal portions and changing the types of drinks and foods you eat. Walking as much as possible is another gentle but effective and cheap option to burn off the excess fats round the tummy. You can even hula hoop and walk at the same time (not sure I'd do that round where i live - but I do take the dog for a walk 2-3 times a day which amounts to about 5 miles a day.) it also gets the circulation going and the bowels shifted - so your food that you do eat doesn't stay in for so long.

Google the "endo diet" on the website endoresolved. There's a list of the foods that promote oestrogen production that you need to steer clear of.

Combine that with the PCOs diet which targets the foods that mess up the insulin levels, and you should be able to get the weight down with careful watching of portions of food.

youngwomenshealth.org/2013/... has great deal of useful info on PCOs diet - be mindful that some of the foods that are PCOs friendly are not actually endo friendly, but with losing weight hopefully the endo if it is there will be being removed, so give the PCOs diet the priority for now. IF you do get endo diagnosed too then you can take in to account the Endo dieting restrictions.You should be quite used to the PCOs diet by then anyway - so it's only a slight adjustment to cut out the endo unfriendly foods.

Cut out all alcohol, caffeine, fizzy pop (all are known to make pains worse) - stick to water (boring but so much healthier for you.) I used to be such a diet coke addict - I only drink water now and have done for many years. And water based soup for a hot beverage.

PCOS is one of those conditions that can be brought on by gaining weight and once you have triggered it you have a tendancy to put on even more weight as the body cannot process insulin - so getting the weight down can actually reverse PCOs which would be excellent if you can manage to do that.

Getting swabbed for STIs is not any comment on your sex life, it doesn't just include the sexually transferred diseases - but any bacterial infections in the vagina and cervix which could have spread up through the uterus along the fallopian tubes and in to the pelvic region causing PID or (pelvic inflammatory disease) which can really compromise your future fertility.

If you get a clear result it narrows down the likelyhood of your problems being endo rather than bacterial. If you do have endo - your immune system is compromised and we have a tendency to not be so good at fighting off bacterial, viral and fungal infections.

Same with the scan - while it will not detect endo in most cases, it can be useful to rule out all sorts of other issues.

It will check for deformity of the sex organs - check the ovaries are where they are supposed to be, that the womb is developed to the right shape in case you want to use a mirena coil to stop your periods after an endo diagnosis.

The scan can look for fibroids, Polyps, hydrosalpinx (swollen fallopian tubes), ovarian cysts of assorted types, prolapsed organs like the bladder or uterus amongst many other issues. So have a proper pelvic scan is an essential step in the journey, not just to diagnosing endo - but so that the medical team treating you now and in the future have a much better idea of the layout inside you.

As an example - I was found to have a pelvic kidney - the right kidney is down near the right ovary, my uterus is split in to two wombs and cervix but 1 vagina...this complicates things. And in my case showed it was not developed enough to have a safe pregnancy, and having things like a mirena coil needs inserting under a general anaeasthetic to guide it in the right direction.

It can also determine if the uterus is forward tilting or retroverted (backwards tilting). If retroverted which is the majority of us endo ladies, then when we have smears we need a different shaped speculum from normal, it could also affect the position we find most comfy when having sex, and also the position we need to be in to have the best chance of conceiving when we are trying get pregnant.

So a scan while it may not spot the clues to endo, can be extremely useful.

It can also be used to diagnose suspected adenomyosis and PCOs too.

Going on the pill is what all of us endo ladies will be doing as a life long management of endo or adenomyosis. Managing or rather attempting to stop the hell of monthly periods is all we can do in between surgery ops to reduce the chances of new endo.

There are so many period managing options to try out. The mini pill is the 1st step. It might be all you need- to regulate your cycle when you do have PCOs, (which is certainly likely given that you have put on weight and have extra facial hair - two of the more obvious visual tell tale signs for PCOs.)

There are longer term ones - Mirena Coil lasts up to 5 years of stopping periods, Skyla coil and Nexplanon arm implants last 3 years, Depo-Provera is a 3monthly injection etc.

All of which are things you can consider once you have a diagnosis op confirming endo.

Everything you have described from the appointment sounds correct to me.

Of course it isn't what you want to hear, and I wish there was a magic bullet to diagnose and treat these pelvic conditions but there isn't, it a lot of hard work and a life time commitment you have no choice about taking on.

Losing weight is essential if you are currently considered too heavy round the middle for a lap op, it certainly is a problem not just for the surgery to get rid of endo, if it is there, but also to try and stop the PCOs and also to help prevent future endo lesions.

We endo ladies need to be doing as much as we can to reduce oestrogen levels. whether that is from the choice of birth control pill or other period controlling methods (many of which contain estradiols or oestrogen type hormones), or from the drinks and foods we choose to scoff, or the supplements we take, or exercises we undertake.

Endo can impact your life in so many ways, and limit what you can do, so the sooner you get yourself back in charge of your health the better. No one else can do that journey but you.

Surgeons can help when you need surgery, GPs can help with pain relief and period control drugs, Dieticians can help with nutritional advice based on which ever medical conditions you have (but there is so much freely available on the internet in terms of good and bad foods that you don't need to wait to see the nutritionist before you get cracking on the weight management.)

There is advice on here and various other forums for all manner of endo related issues, and loads of ladies on the forum have PCOs too and other pelvic chronic conditions along with endo.

Learning to live with them day by day.

Any questions you might have - do post them on the forum. There are bound to be other ladies who have already been down that road and can share their experiences.

What I would add is that even if you cannot lose enough weight for a safe key hole lap op, then open surgery is an option..... but it is a HUGE commitment in terms of recovery time when compared to a lap op.

I went in for a lap op - woke up to discover my op had had to become a laparotomy (big hole op) and it took close to 5 months to be free of the op pains. the lap op (keyhole) is just a few weeks.

So the more time and effort you can put in now while waiting for a diagnostic surgery the better your chances will be that it can go ahead and save you so much pain and wretched recovery time afterwards. Believe me it was no picnic of an op to end up with a laparotomy.

I had had endo symptoms for 29 years by that stage, understandable it was rather a mess inside by then.

Wishing you a tremendous amount of courage and will power. You can do this, and can improve your quality of life a great deal.

[donna1904 in reply to Impatient]

Thank you so so much for all the info. I think I'm just freaking out about fertility problems, I'm kinda at that age where I feel like the clock is ticking. I've lost three stones before so I know I can do it, the fizzy drinks are the worst for me, I drink too much of them so I will cut them out. I do carry most of my weight on my tummy so I will definitely get a hula hoop and maybe an exercise ball would be good too.

I'm on the PCOS forum on here as well. I am so grateful for your advice, I really appreciate it, I feel a lot better about things now I won't let this get me down. Thanks again

[Faith_87 in reply to Impatient]

Hi

In regards to a retroverted uterus- i have that as well as endo. i have been ttc for nearly two years, is there a certain position i should try, when ttc?