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Bastarding uterus and its many foibles

(13 Posts)
SnakeyMcBadass Thu 09-Jul-15 11:31:11

I've had heavy, painful periods for some time. The pain comes all the way through my cycle, randomly. My cycle is irregular. My pmt symptoms include the usual murderous rage, clumsiness, anxiety etc but also itchy skin, restless legs, nausea, dizziness, headaches. My entire life is rules by the shitting thing. I take 20mg of citalopram in order to function, and have done for three years.

Back in March I was diagnosed with a uterine polyp. It was removed under hysteroscopy and was quite large. Doc was confident it would stop the flooding. Wrong. So in may I had a laparoscopy looking for endometriosis. He found some, and removed it. First period was a week post lap and much lighter, but painful. Not unexpected after surgery, and I was hopeful. Now having second period. Started ok, but day 2 just went batshit. Going through super plus tampons and those enormous night towels every hour and a half. Clots I can feel myself passing (sorry). Had to get up in the night to change everything and slept on a towel. Utterly miserable. Today is day 3, and it has slowed down (still clots, but smaller). I'm going back for follow up with consultant next week.

I suffered with hyperemesis in both my pregnancies and since ds2 can't take any hormonal contraceptives. I just vomit until I want to die. I can't have any more children. Dh doesn't want any more. I'm 37. I'm at the end of my tether with feeling ill and the mental health bat shittery. I just want it all to fuck off. I know the doc will suggest the mirena, but I'm wary of possible issues with it. He will also discuss ablation, which might work but it's another GA and I'm so fucking sick of hospitals. If a hysterectomy would make me human again, I'd want that, but I don't know if it would help with the hormonal roller coaster.

I know this is long, I was trying to cover every relevant derail. Any advice would be greatly appreciated.

SnakeyMcBadass Thu 09-Jul-15 13:34:30

Anyone?

tribpot Thu 09-Jul-15 13:48:19

God. Well it sounds fucking awful. I'm sorry the previous surgeries haven't helped. Is it worth seeing if the periods might settle down in a few more months? I can't see why they would, esp after two interventions have failed to show any improvement but I think the doctor will want to have exhausted other options before considering major surgery.

In a similar light, is it worth trying Mirena before discounting it? I am very dubious of it myself and have preferred to continue with my heavy (but nothing like in your league) periods rather than try it - but again I wonder if it might be worth a shot.

My mum suffered in a way similar to you and demanded (and got) a hysterectomy in her early 30s. It transformed her life. I don't see how you can go on as you are and I'd certainly be asking the consultant whether he/she thinks it would help and if so, what would be needed to get on a waiting list.

Theas18 Thu 09-Jul-15 13:50:37

Try a mirena. I had amazing result from it for 10yrs rrill I grew fibroids.

Mckenngp1 Thu 09-Jul-15 14:19:22

Hi there, I feel your pain! I had a big op last year for tons of endometriosis which helped with stomach pain tremendously but I had/have all the aforementioned pmt symptoms and it is hell. The only plus point is I did opt for the mirena coil so although I get regular moods,sore boobs etc I don't have periods yay! I cannot tell you what a relief it is to not have periods from hell anymore. It took a while to settle in (3 months maybe of odd spotting/bleeding) and I am terrible for googling and reading the horror stories about it. But I was told it was best option for dealing with periods and if it stops me ovulating this will stop the endo growing like hog weed. You can always have it removed if it doesn't suit. Good luck x

AttilaTheMeerkat Thu 09-Jul-15 14:50:27

I do not think he found all the endometriosis; with this you really do need to find a highly skilled surgeon who has a specialist interest too in this disease.

Have you had any discussion to date about the findings of the previous lap operation in May; it does not seem like that happened and your follow up is next week.

I would not accept the Mirena or ablation without far more discussion beforehand and do not get railroaded into accepting it anyway. Mirena would only treat the symptoms (and perhaps not very well). It anyway is never going to address the root cause.

If you are not doing so already I would suggest you keep a daily pain and symptom diary so you can show this person as well. This will also give him clues as to how to proceed. You may also want to consider getting a second opinion.

Mckenngp1 Thu 09-Jul-15 15:50:29

I Agree with above comment. I should add I had the mirena a year before my big op whilst I waited for mri scans and consultations with gynaecologist and colo rectal surgeons including a sigmoidoscopy. So it did provide relief whilst I waited to be sorted surgically.

foxinsocks Thu 09-Jul-15 15:56:15

don't get the mirena if you can't tolerate hormonal contraception. I can't tolerate it well, was convinced by the doctor that mirena would be different - it wasn't and I suffered 6 weeks of utter hell till I managed to convince them to take it out.

Endometrial ablation - if you can have one, get one. They 'burn' the lining of the womb off. Simple day case op under a general but very quick. Something like 50% of people never get another period and 85% have periods that are far far lighter. Because a lot of the pain from painful heavy periods doesn't occur any more, it also makes you feel a lot better. I am 4 weeks post op now and I have my fingers crossed that it has worked well for me!

Endometrial ablation is designed for very heavy periods. In fact, I was told that private health care providers will always now query a hysterectomy if they haven't tried an ablation where the reason is heavy bleeding. As it's so much simpler. Not everyone can have one though so get it checked out.

SnakeyMcBadass Thu 09-Jul-15 17:31:07

I really don't want the mirena. Ablation sounds like a good compromise. Won't help my pmt though.

foxinsocks Thu 09-Jul-15 19:07:15

Hi snakey, although it does nothing to your hormones, they have reported it having a beneficial impact on PMT presumably because you're not bleeding like niagra falls for a week so less tired and stressed!

SnakeyMcBadass Thu 09-Jul-15 19:10:21

I suppose that makes sense. I'm hooked up to my TENs machine mainlining chocolate right now. Dh is scared.

foxinsocks Thu 09-Jul-15 21:06:33

Good luck!

ShortyShortLegs Sat 11-Jul-15 21:17:47

I have ridiculously heavy periods, 10-14 days of flooding and clots.
I have tried the pill, mini pill, Tranexemic Acid and Mefanic Acid, Mirena and ablation.
Pill - headaches, acne, no effect on periods.
T & M Acid - I'm allergic, plus heavy bleeding resumes when tablets are stopped.
Mirena - constant bleeding everyday for 9 months until I begged to have it removed.
Ablation - worked at first, no periods for a few months, then light periods and after a year a return to heavy periods like before.
Second Ablation - no change whatsoever.

I am 38 and have other complications (2 c-sections, 2 hernia repairs, one with mesh, one major repair causing muscle and nerve damage) and am now at the point where Gynae have at last said I can have an exploratory op, if they find no problems then they will go on to do a hysterectomy.

I have been bullied by one doctor to have another Mirena, but I just point blank refused (she even made an appointment for me to go into hospital to have it put in, cheeky cow).

I would recommend ablation. The actual procedure was not bad at all, I requested a spinal block instead of GA with my first one, it was over and done with in minutes! And recovery was no worse than period cramps and a little discharge. While it worked for me it was great! I have since been found to have a bi-cornate (heart shaped) uterus so double the surface area means there is not enough hormone in a coil to deal with it all!

I also had a course of injections that puts your body into menopause for three months at a time, that was great, but you can only have it three times in total. Drawbacks were the injection into stomach bloody hurt, and that you have to take HRT for the side effects, I had hot flushes. It was great though, I had two injections and 6 months period free which gave me a good break.

I have found Gynae is obsessed with anaemia and are much more likely to treat if you are even slightly anaemic...unfortunately I am not, ever.

Also, if you have had ablation and still having heavy periods, there is no where left to go! They are much more likely to discuss a hysterectomy (I have had to argue the point much longer as I have complications, but getting there now, pain clinic doctor has backed me up, as well as GP and as I have tried all the options, and been firm about not going back and trying them all over again)

Good Luck, I hope you get something effective smile

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