Frustrated and confused!!!

[alexander120]

Will try and keep this very brief! I have head heavy and painful periods on and off for a few years, I have not had a lap yet. Over the last 8 months or so they have got a lot worse, I have to have time off work and need to change pads etc every half hour with large clots. The other symptoms I have are:

Painful sex (stabbing during then cramping after)

Feel very tired all the time (I am very aneamic)

Lower back pain, which I have to take meds for daily

when I go for a long walk I get numbness in my thighs

Bloated

IBS and all the symptoms that go with it

Daily pain in lower abdomen (like mild period pains)

Spotting in between periods and after sex

Went to the docs a few months ago and was prescribed traneamic acid and mefenamic acid, these failed. Went back to docs and was given norethisterone to take all the time and naproxen to take all the time. The last 2 tablets have worked until I ran out of norethisterone then it was back to square one! Had bloods done which showed I was aneamic but could not give me tablets as my liver levels were also very high. All the doctor wanted to do was have a mirena fitted, I did not want to do this as I have trouble with anything hormonal, get very bad mood swings and acne. I did push to see a gynae, got a quick referral as we have private medical cover.

So I go to see gynae this week. Gave me 2 options! either an endometrial ablation or a hysterectomy. I have decided to take the ablation for now, it will be quicker I am having it done on Monday next week along with a hysteroscopy. He did mention endo but he said the only treatment for that is a hysterectomy! I really have to have the op next week as I cannot afford to have another period as I am very aneamic. I must say it has not left me with much confidence but feel so low and tired all the time, I am constantly crying at the moment. I honestly cannot remember the last time I felt normal with no pain. Since last October my immune system has been so low, I have had bronchitis twice, laringitis, asthma, ear infection, tonsillitis and needed so many antibiotics and steroids. I am really not sure if this is connected with everything else! I really dont want to feel like this any more, I just hope that I will get some relief from the ablation next week. Anyone with any advice would be appreciated please.

Julie

[worth71]

my symptoms are quite similar, and i still get them even with a mirena coil in and i can, as can many others, relate to how your feeling, it does get you down (i posted earlier with a little rant) - do you mind me asking what sort of testing have you had done, as in scans etc, i see you've not had a lap i haven't either - i've had countless internal scans, hysteroscopy, mri which all show issues such as fibroids, large cysts etc, very thickened lining but i haven't been offered anything near a hysterectomy, which at the moment i think i would snap their hand off if they did, i always against it unless absolutely neccessary but am feeling so fed up with years of this now and being fobbed off with minimal treament.

let me know how the ablation goes, i'm on the waiting list for it, could be another 15 weeks before i get it though but am hoping it helps, although my gp has told me it won't help with the pain but could help reduce bleeding - i've had mirena in for 14 months now and its not helped.

good luck xxx

[alexander120]

Hi worth71

My Gp wanted me to try the mirena first but I refused and insisted on seeing a gynea, her words were "they will only offer you the mirena", got me very cross! I have had a transvaginal ultra sound which just showed my endometrium was thick. I only saw a gynea on tuesday this week, had the pre op done on the same day and I have the op next monday, I cannot imagine waiting 15 weeks! we do have private medical so it has been very quick, the gynea does not want me to have another period as my iron levels are so low. I could not take hormone pills for too long as my liver enzyme levels were double what they should be, had another blood test and they have come down thank goodness. I have been talking to some women on a facegroup page as well, there are lots that say a hysterectomy is not the answer if it is endo. I really was hoping that it would also help with the pain as well, get stabbing pains most of the time! But the more I learn about the ablation the more I realise it wont help with the pain, so I think I may be back to square one very shortly. It is so so frustrating, I have yet to speak to a doctor who will listen. I will let you know how I get on. They have not found any cysts yet, but they are also doing a hysteroscopy, although I am not sure what this will show. What did your hysteroscopy show?

Thanks for the reply

xx

[missteal]

Hi, sorry to hear you're going through this. I hate to say it but your surgeon doesn't sound like he really knows about endo! A hysterectomy will only cure endo if the endo cells are only on your womb, in most cases it is on other organs. If you have a hysterectomy, have endo on other organs and take HRT then the endo will continue to grow

Good luck xxx

[alexander120]

Thanks missteal

I agree it doe not sound like he knows a lot about endo. Will be having the op tomorrow and see if it helps with anything. Then will decide what plan of action is next

[uglyduckling]

I am so sorry you have had such a bad time how was your op I hope it went OK and you are recovering.

If you would like any help or information then please let me know.

[alexander120]

Thanks uglyduckling. Had op yesterday, op went ok I think they didn't say too much. Was very sick after had general. The most horrendous cramping pain (like child birth) pain has eased a bit today but feel so tired and have no energy. Its so frustrating as I normally work all the time! Have you had the same? If you have can you let me know how you got on pls any advice, got a summer ball to go to on the 1st sept so need to be fighting fit!