PMT, hormones, the Mirena and why is it a bad idea to have a hysterectomy if you still have endo?

[memyselfi]

Hi all, I'm feeling absolutely fed up with everything atm. I've had three laps and still have endo on bowel, rectum, ureter and ovary and it feels like it is back on the pouch of Douglas and pelvic ligaments etc too

They put the Mirena in during the last op, and I had awful mood swings and spotting for six months, then no bleeding for another six months (which was great, I still had endo pain but having no actual bleeding/anaemia helped) but now I have spotting again and the period pain that goes along with it. I've also had the sudden plunge into depression feeling that I had during the first six months of it. Will this continue? Does anyone know?

So can anyone explain why the Mirena is recommended for women with endo?

I am sure I was told that if I had the Mirena put in during the last lap, it would stop the endo regrowing/increasing elsewhere. However, they also say that it can't possibly be affecting my moods because the hormones don't have an effect outside the uterus. Can both these things be true?

I don't know what to do.I feel I have no options. I am truly scared of any injections to see if the pain stops, I honestly think I will lose my job with the sort of mood swings that people report. I completely over reacted to something at work yesterday/today and got told off for it. Thing is, I thought I was being completely and utterly rational, I even slept on it. Then, this afternoon, after I had sent an email of doom - the mists of PMT cleared and I realised that I was being irrational about it. At least before the mirena I knew when I had PMT now it seems like it can be anytime and I don't know if it is real or not. How much worse would it be with those injections... I think I'd lose my job, there are only so many times you can apologise.

I fell out with my consultant over his insistence that I have a hysterectomy. I want to go back to my GP and ask for a second opinon, but she also thinks a hysterectomy will 'cure ' the endo. Can anyone tell me why some women are worse after hysterectomy? Or is that a myth?

If anyone has any thoughts on any of the above, please let me know.

TIA - I really have had enough today. You know when you feel you have run out of options completely and there are no lights on the horizon... I am sick of the pain, sick of not having a proper relationship with my husband, sick of being tired, sick of being told that I should just have the injections as if this job I hang onto by the skin of my teeth is nothing, sick of having no social life, sick of having a swollen stomach, sick of no one IRL understanding, sick of waiting for menopause for my life to begin, sick of being so boring and miserable, sick of being in tears all the time. In short, fed up to the back teeth with the lot of it. This is not who I am deep down, it's just who endometriosis makes me.

[Hidden]

You poor thing. This bloody disease is an awful thing that impacts on every part of our life. I really sympathise with you and am sending you massive cyber hugs. X

I have had endometriosis for over 20 years. I have tried surgeries and hormones. Surgeries have time limiting benefits and have caused me adhesions. Hormone treatments really cause me problems...... Migraines, spots, weight gain, hair loss, anxiety and depression.

My pain and other problems have caused me now to seek the help of an endometriosis specialist and I am seeing him next week. I want to see someone who specialises in this dreadful disease so I can get the best care I can.

Hysterectomy will not cure endometriosis. It does not get rid of the Endo that is on your bowels, bladder or other organs. A hysterectomy would help if you had adeymosis but even then it should be regarded as the last resort treatment.

I just want to add that the Mirena caused me to have anxiety and depression. Like you, my doctor said it would be very unlikely that the Mirena would be the reason for these issues. After a year I demanded that the mirena was removed and once it was, my emotional problems improved dramatically! Coincidence????

I really wish you all the best.

Barbara

X

[memyselfi in reply to Hidden]

Thank you, it's so isolating, isn't it. Unfortunately, my consultant insists he is an endo expert and there is no one else locally.

I should have been clearer above, when I said a hysterectomy, I meant the removal of the ovaries too. The Consultant and GP both seem to think that it is OK to do this but I know some people think it causes even more problems, I just don't know why and I need the info to ask for a referral out of area.

I don't know if I had adenomyosis, I know that my uterine lining was more than twice the thickness it should have been.

They really did convince me that the mirena would solve everything, then at my last appt, the Consultant said I really should have managed my expectations!

[Hidden in reply to memyselfi]

In your position I would ask for a second opinion. I'm 43 and have been lucky enough to have had children. I want to avoid a hysterectomy at all costs.

I'm afraid we have to be very pushy and proactive when it comes to our care.

I don't know how old you are, but by having a total hysterectomy, you will be open to other health problems.

It is worth you travelling to an Endo specialist and not just seeing a consultant with Endo experience.

Best wishes,

Barbara.

[memyselfi in reply to Hidden]

The thing is, where I was treated is about to get specialist endo status. That's why they won't refer me anywhere else, they say I won't get any better treatment. The GP completely goes along with my consultant in everything.

[daffodil]

Oh,I am so sorry to hear you are having such a stuggle ,as I can empathise with you.I am in a similar position. I am 48yrs and have had endo and adenomyosis(?) since started my periods.I have had numerous laps,excision,burning of adhesions and two burst ovaraian cysts .Like you,it seems to be everywhere.I also am feeling bullied into having total pelvic clearance and would have had last December, had I not been so ill with ME and a blood clot!

I have had lots of 6 month courses of GNRH injections, as well as a nasal spray called Synarel. These work by putting you into an artificial menopause and I have found then very very effective.No periods and not a twinge of pain,butthe down side is that unless you have add on HRT( this will feed any endo and give more pain) you are only allowed 6 months at a time. Because I have also had other very serious health problems - Meningitis( left unable to walk,balance destroyed,memory problems,migraines) and ME,I have always managed to put surgery off and in total had over 3 years og GNRH agonists ,each time with a 6 month break and each break in agony and in hospital! Progesterone jabs which I now have seem top be less effective but do stop periods, so at least I am not bedbound.

There are lots of different kinds of GNRH agonists - some as nasal spray,some as implants and others as injections. With all my treatments it has taken a few weeks for them to kick in,but they have been amazing.Ifyou have not tried the nasal spray that may be a good thing to try and if you do get bad side effects,you just stop! I had a lot of hot flushes with the nasal spray but felt amazing on the Decapeptyl and had no pain,not even a twinge.

If you type hysterectomy at top search box there are lots of discussions on the hytsterectomy debate.Do not be bullied.it is your body.I was told that because my bone density is lowered( not yet OP) that they dont even want to give me Depo Povera any more,but I am insisting that I would rathe rtake the consequences in the long term( this is guaranteed that you will get osteoporosis, as diet plays a big part)What I have never understood is them adding HRT to an oestrogen dominant condition.Even if ovaries are taken out we still have oestrogen stored in fat cells and so unless your endo is only in the womb(adenomyosis) a Hysterectomy will only help to stop period bleeding.

My gynae,despite saying pelvic clearance( womb,ovaries,tubes,cervix plus clearing out endo in abdomen) is not a cure for endo,still is saying this is my only option.So I have decided to try to stick it out till I am 50yrs and hope the menopause hits soon.The progesterone helps and though I have some discomfort it is bearable.

Depending on where you live you may have an endo centre near you -there is another post which gives a website. Sorry cant locate it!Definitely ask for a second opinion,preferably from an endo .

Do feel free to privately mail me,if you fancy a chat as seems like we are in similar place!

Give it a few hours and days and lots of ladies will answer you post.Hang in there.

[memyselfi]

That's really interesting about the Synarel, no one has mentioned it as an option. I am 45 and hoping for menopause soon, like you I'm just hanging on in there but it is getting increasingly difficult. How long did it take before you felt better? I understand that there is an initial increase in oestrogen before everything shuts down. Just wondering if I could try it during a holiday so if it does affect me badly I can just lock myself away in a room and avoid everyone.

We do have a family history of osteoporosis and I watched my grandfather decline as his spine crumbled so I really don't want to go there myself. Having said that, maybe there are ways of managing the risk, but no one seems interested in discussing it with me. As soon as I said I didn't want the injections and total hysterectomy they washed their hands of me and even though the last op made no improvement at all, they insist that the pain is unlikely to be from the endo - despite me having stage 4 and them not removing it all.

Thank you also for being here. I do get very lonely, people at work ask if I am OK and what can you say? Nothing except 'yes, fine' swallow another painkiller and keep on going because there just isn't a cure and no one wants to know the gory details.

[wp22]

A hysterectomy is NOT a cure for endo. You will still have the endo everywhere else as they cannot remove your bowels, bladder etc. so this is NO cure. Please find another cons, perhaps ask on this site if anyone can recommend one to you in your area. If your present gynea recommends hyster then he defo ain't a specialist. He doesn't seem to know what he is talking about!.... If you don't want to have one, then dont be bullied into it. After all what would a man know, hysters can cause other problems down the line, re hormones and lots of other things that they won't tell you before hand. X