Menstrual/Fertility issues and lupus? : Hi this is... - LUPUS UK


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Menstrual/Fertility issues and lupus?

Agirl89 profile image

Hi this is quite lady specific, however I wondered if any of you have any thoughts or insight on how lupus may impact on menstrual symptoms or condiditions if attal? 

Also I wondered if anyone would have any insight into having children and wouldn't mind sharing? 

Long story short I have separate conditions and have currently finally received the first part of my diagnosis for lupus rather than my current "unspecific autoimmune disease". I have ITP and Raynaulds which was diagnosed years ago. I also have a a few ladies problems (endometriosis, dysfunctional uterine bleeding(v heavy, 3 weeks out of 4), and hormone problems. 

Thanks in advance 

10 Replies

Hi Agirl

Lupus can affect menstrual and fertility problems in many ways. Also the different drug treatments can as well so a lot of talking to your doctors is needed I think. I always had a flare a couple of days before my period and my Consultant used to advise putting my steroid dose up to cover it and then to reduce it again when period over. I've also gone into an early menopause they think because of the steroids taken over a long time so one way or another these illnesses can give us lots of problems to overcome. I hope you get your better diagnosis soon and can start to feel better on the treatment. Hope I've helped. X

Agirl89 profile image
Agirl89 in reply to misty14

The idea of fluctuations in medications is interesting! What happened if you didn't? 

I feel so nauseous, tired, ache like crazy and feel terrible mood wise, then when bleed, it's crazy amounts, vomit, ache and can't do much attal..this is my 3 our of 4 weeks atm..they are debilitating..does any of this seem familiar? Xx

misty14 profile image
misty14 in reply to Agirl89

Hi Agirl

Some of the symptoms are familiar, nausea, aches , tired but not as severe as you. You certainly need treatment that could be adjusted for these nasty times. You can't go on like this. Hope your other tests are soon.X

Patricia2015 profile image
Patricia2015 in reply to Agirl89

I had horrible menses since my UCTD came up. I had to stay in bed for a week each month and could not roll over in bed because of the pain.

 Feminax and paracetamol did not help by far enough. My gyno advised me to take two two anticonceptive pills a day. 

After that I started to bleed every day for months on and the pain was horrible. I couldn't sit or stand longer than an hour a day and took opiates to survive. I went to a gynaecologist of a wellknown hospital. She did a vaginal ultrasound and said she couldn't see a thing and I need to go to a psychologist as it was all in my head. The pain could be but I was certainly not imagining the daily bleeding in my undies.

I almost lost my job because of this suffering.

After about 2 weeks I went to another gyno in another hospital. He too did a vaginal ultrasound.

My uteres was full of adenomyosis, cystes and was swollen. He could not imagine how it was possible that that female gyno said she couldn't see a thing.

I got Esmya and it saved my uterus. I did two three month courses.

After that I had normal menses, I was so happy, I was even able to go to work. And ofcourse never bleeded outside the menses again.

Now my menses is starting again to be bad so I will do another Esmya course soon.

Please look up adenomyosis and Esmya.

Btw I am 41.

Agirl89 profile image
Agirl89 in reply to Patricia2015

Hi Patricia. 

Thank you so much for your reply!

You appear to have suggested a drug to me that I have yet to have been guinea pig with! So thank you, I'm seeing my gynae next week so shall ask about it! 

How many courses can you try? 

And have you found treatment for your uctd? X

Patricia2015 profile image
Patricia2015 in reply to Agirl89

You are welcome 😘.

I had two courses of each three months. You need to have 2 or 3 months of menses between a course.

After the first course my troubles reappeared in about 3 months, after my second course in about 9 months so I will start a new course with the start of my next menses, in approx a week from now.

Esmya is not typically subscribed for adenomyosis but primary for huge uterine cysts to make them smaller before exercision. My cysts were never very large but especially the adenomyosis caused me much pain and bleeding. My brilliant gynae said that we could try Esmya for my kind of gynaecological problems as well and he was right!

I think you can have three courses of Esmya in total.

Good to know that in the first course I had a lot of migraine attacks and heavy vertigo attacks, both for the first weeks. I still have migraine and vertigo bit thankfully not often.

Here you can find more info about Esmya:

For my UTCD troubles please see my profile.

Together we stand strong👭👭👭👭👭

My cycle was badly affected , especially in my early thirties making a hysterectomy the only option  . Before this i suffered 6 miscarriages- however i did manage to carry 3 babies to full term.Knowing what I do now i would ask the lupus specialist for advice as my gp didn't  have a clue about my condition.I learned that i had to have bed rest between 10 weeks and 16 weeks and this helped me carry to full term . Pregancy is manageble providing you access  the additional support and understanding of the conditions suffered from the onset.

Agirl89 profile image
Agirl89 in reply to joanne27

How did you feel during the pregnancies? 

Sorry to pry but did you have horrible monthly cycles or were they impacted in duration or anything additional? I'm currently deciding between potentially trying for a child or a hysterectomy...And I'm now curious whether lupus could be the untreated aspect that stops the other treatments from working... Thanks for your reply x

to Agirl89       

To be honest I spent the most of my first full term pregnancy in hospital or under a lot of their supervision.I bleed on and off for the first three months .Following pregnancies seemed easier but i did have sickness and vomiting for nine months .My cycle deteriorated in my early thirties and I bleed heavily for long periods of time-all tests suggested an early menopause as my mother had also had too. I didn't have a lupus  diagnosis at the time and it was only much later the connection to the problems were linked and understood.

Having my kids was very important for me and any difficulties in pregnancies soon didn't matter once i was a mum. I didn't have to make the decision about hysterectomy till after I had had my family. Having a hysterectomy came with its own set of additional problems like going into the change  , balancing hormone levels hair loss,mood swings , so take proper advice on such a big decision as you don't want to make the lupus symptoms worse.If you are still young these are life changing choices that we make. I payed to see a hormone specialist to see if I could improve my monthly cycles but after two years I had to submit to surgery, but I had  my family and wasn't having any more children.

I went on to raise my three kids as a  single parent with lupus.I believe the love for my children helped me battle the illness and it has kept me alive. My kids are all grown now. At the moment i am very ill with my symptoms with no respite since before xmas and each day is like some endurance test.I have been like this many times over the years so now I allow myself to have a duvet day and rest and no longer beat myself up for what i am unable to do - and instead I surround myself with all my guilty pleasures.

Just a quick thank you to those who have replied, you have given me a new avenue to query for management of my ladies issues...hope you are all as well as can be, and thanks again for all of your kind replies! Xx

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