A question for the ladies!: I'll apologise now... - LUPUS UK


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A question for the ladies!

Nyc2012 profile image
13 Replies

I'll apologise now, this is going to be long winded before I get to my question! I've been having a lot of problems with menstrual bleeding & my contraception. I used to use an implant but with my 3rd implant/ about 1 & 1/2 years after it being fitted, I started having a lot of irregular bleeding (All of this was around the same time as having a flare & waiting to be diagnosed) I kept getting told it was due to stress then it was due to my implant. I eventually had my implant removed & started using progesterone only pill.

I was still having constant heavy bleeds/ occasional pain/ passing clots (sorry to sound gross!) till eventually (after about a year of my gp fobbing me off!!) my rheumy nurse referred me to a gynaecologist. I was really pleased & thought 'great help at last' until I met my consultant who was rather rude, said it had nothing to do with Lupus & it was all down to the pill!!!! (& he did all this without taking a history!!)

He did do some tests, which I get the results of later this afternoon, but I think it's a waste of time going. He also told me to double my dose of the pill but it's not helped. Obviously he doesn't think Lupus is contributing to the problem but rheumy nurse did, so I was wondering if anyone else has had this problem & what contraception is best to use.

Again sorry for going on but I would be really grateful for any help & advice :)

13 Replies
zebedee01 profile image

I had this problem when I was on the progesterone only pill aswell, it was horrible, so it may well be down to that!

I have been advised by many doctors to have the coil put in, this usually stops bleeding altogether x

Nyc2012 profile image
Nyc2012 in reply to zebedee01

It's nice to know other people have had same symptoms. Before I had my implant taken out it was suggested to have a copper coil but when I saw the family planning doctor she wasn't keen to fit it as ive not had children, which apparantly can make it more difficult?? However the gynaecologist today seems very keen for me to try the progesterone coil, to go back in 9 months for a review & if I'm still having probs he was talking about burning the lining of the womb??!! I have an appointment with the rheumy nurse next week so I'm going to have a good chat with her as well before I do anything x

jozyjump profile image
jozyjump in reply to Nyc2012

Hi, I've had the womb burnt away (ablation) it make you unable to have children. However, it did make a huge difference to me. It did not stop the bleeding but went to 3 days a month and hardly anything at all. It was so good. Some people have no relief at all when they have it done but this changed my life for the good. But go to have had your kids first

rockinr_56 profile image
rockinr_56 in reply to Nyc2012

OMG is anybody checked you for endometriosis or pelvic inflammatory disease?

Tonkawoman69 profile image

Well this is very interesting indeed.

Hi, I had similar thing happen. At the beginning of last year I started hemorrhaging, bleeding heavy, clots the lot. Thought I was having a miscarriage. I was rushed to A&E as couldn't stop bleeding, filling a pad every 10 mins. They were useless but said wasn't miscarriage and said to see doctor for pills to control the bleed. They put me on tranamanic acid and utovlan/noresterone these are all tablets to stop excessive bleeding and clots. The tablets eased it but still bleed and clotted not as bad. They tried take me off tablets and it all went wrong. I went for a scan which the first one showed nothing as usual then did an vaginal scan and found a mass college ting on my womb. I was ovulating and bleeding at tgne same time. The rushed an urgent appointment through private clinic and I was in theatre within the week. They took biopsy and did a dnc. Lucky it wasn't cancer but apparently my hormones messing about. I stayed on theses tablets for months after trying different things like the hormone coil but the bleeding continued from April to September when they finally did a hysterectomy. Two weeks after the hysterectomy my hand went cold and my thumb and finger went blue after having awfully unbearable pain and constant visits to the doctor and A&E during August and them telling me I might have carpel tunnel. This was a clot that happened in my left ulna artery. I have lost a artery in my thumb and finger and damage to the hand and Palmer arch. At the end of last year after many tests angiagram, cardio tests, scans and xrays there was nothing else they could do. They referred me to a rheumy and hematology for a blood screen. The rheumy seem to ha e the attitude of your gynecologist. I have made a complaint to Patient liaison team. In between this I've had to have another operation in March for a Fallopian pro lapse and might have to ha e another op to correct part of the Fallopian tube that was left. I have lymph nodes inflamed in groin. So loads going on. I was told had lupus and Hughes but St Thomas hospital are saying only have the inhibitor for lupus and definitely have Hughes. Lupus as I know can effect women through eg hormones and medicines. I wonder if this is connected? I'm still undergoing tests. Got my work on my back for a long term sick review, worry about future but nothing I can do about it. What will b will b. I am happy to share more experiences if it would help. But you need to keep fighting your corner. I think they put my bleeding down to maralgia which is heavy bleeding.

I hope my story helps you get answers so keep badgering them. Its all to do with money and staffing. Keep fighting.

Andrea x

Nyc2012 profile image
Nyc2012 in reply to Tonkawoman69

OMG you really have had a difficult time with very little support, I'm so sorry :(

I work for the NHS & I treat patients. I always try to treat/ speak to them the way I would like to be treated/spoken to & I find it appalling other health professionals, especially those who are 'high up', can be the most unhelpful/ unsupportive/ rude! Thank you for your reply, I will keep badgering & I hope things start to improve for you soon x

I have no idea about the answer to this. I just love the way male doctors presume to know all about menstruation and menstrual problems. You can bet that if they had periods, it would all be take a little more seriously!

Nyc2012 profile image
Nyc2012 in reply to

The funny part is, when I went initially I had a biopsy & as he was doing it he told me this is what it would feel like having a coil fitted. As I lay there all I could think was 'how the hell would you know!!!'

Tonkawoman69 profile image

I agree Maggie. I was glad at time as my doctor did a lot of urgent referrals. Thing is we had my favourite doctor die, then we had a brilliant doctor , he got me the right care straight away. He really did care. Bigger politics. Then he left due to travelling to work and not spending time with his family. Then two others started and jacked the job within months. I've started build a understanding with a new lady doctor and she seems ok. But its waiting around for certain doctors and consultants to get a move on. I saw my gynecologists on the 30th May and he said he will see me in 4 weeks but no appointment. .I have got an appointment with him on 4th July but that's private through NHS if he doesn't refer me as he said to his clinic at the hospital I'm going to the private one that he didn't cancel as pain bad in my side. I bet you see everything NYC 2012? I had a problem with a very rude, arrogant , condescending rheumatologist who seemed OK but then made me feel like I was wasting his time. He even wrote a letter saying I was unremarkably well but I have Hughes and all these other issues. I was far from feeling well. He has delayed my care and other consultants look at that as the hematologist said he hadn't got full result when saw me that's why he told me nothing wrong. It was the way he was with me nd the things he said were weird. He asked me my profession I said I'm a teacher he was so rude he said `Well are u listening teacher ? He then said in a rude way ` you do know you having got a womb and you having got cancer? I know I have no womb as had a hysterectomy.He was condescending and railing off results from the screen like nothing wrong with you. I gave up and just cried when I came out. I have complained but it took me nearly 3 months before I complained. It was his letter that prompted me as I never complained before. I just want him to listen to other patients not just dismiss people. These doctors miss things. I'm off to bug my doctors next week about referrals to urologist and pain management team and physio but not had dates yet. Hope you get the answers soon to. As I said keep bugging seems to be the key.

TC Andrea

eejit profile image

I also had the same issues, I had a D&c carried out and the marina coli fitted however the coil made me very ill and a week later I got it removed. They then began to talk about removing my womb but as I was 31 at the time I wanted to explore other options. I was prescribed Cerreztte (mini pill), this has been a god send I haven't had a bleed in years! I do however get a break through bleed but to be honest this is nothing! But because I've been on this for the past 6 years my rumi is concerned and wants to look at other options!

I hope you get a solution soon!

Good luck and best wishes!

madmagz profile image

I had a merina coil fitted eight years ago and would definitely recommend it. I stopped bleeding almost immediately and have never had any problems. Had it replaced after five years and will have this one replaced when it is time as I would not be without it. I could not take the pill due to allergies and did not want to risk any additional weight gain anyway. I did not need a D&C first and know of others that have not needed it either so have been able to have this fitted by the G.P. so I don't even have to go to hospital which is great as my G.P. is great knows me well and knows all that I have been through so I don't have to go over my history.

Good luck in whatever you go with. :-)

Madmagz x

willowwag profile image

Hi NYC, I used to have a coil fitted which my body did not like for the whole 5 years i had it in my flares were very bad, i found out my body was reacting to a foreign body in me, this made my sle worse, coil removed and now on cerezette, the pill that you take every day you see no periods at all, my rhumy suggested this as it does not interfear with my medication. Its a fab pill and would not go back to the coil. Wishing you all the best, its hard not knowing what way to go but hope you get there. Hugs x

vonnyrad profile image

This strikes so many chords with me! I was treated with Cyclophosphamide after the birth of my daughter(bad post-partum flare), within a few weeks I began experiencing menopausal symptoms, really quite severe.I told various doctors, but because of my age (29) no-one took me seriously.Eventually after about 18 months I was told I had' premature ovarian failure', and referred to a gyn. consultant who specialised in menopause treatment, I began taking HRT as I had horrendous symptoms, and for the sake of my bones etc as I had been on steroids a long time.From then on I had the heaviest withdrawal bleeds imaginable, during which I couldn't leave the house!I tried a few different drugs, which helped slightly but then was told I couldn't take them due to having a kidney transplant.After a few years of this I was fitted with a Mirena coil, being assured by the same consultant it would stop my periods altogether eventually, it sounded like the answer to a prayer!However, I proceeded to bleed non-stop, very heavily, for 16 weeks, before being admitted to the renal transplant ward with severe anaemia(HB of 5/6)and faling kidney function.There I met another lady transplant patient who also had been fitted with this coil, whose kidney had failed completely ; from being perfectly well she was now awaiting dialysis.My renal consultant said he thought my immune system was reacting to a foreign body, and especially so after having had a transplant, it pushed me over the edge, as it were.I had the coil removed, and my function improved, although not as good as before, and I was still left with the heavy periods.I eventually had to leave work ( I only did a bit of part-time teaching, not a lot but I couldn't be off for a week every month)because of the uncontrollable bleeding, I was constantly anaemic and having blood transfusions , my whole life was affected, on top of everything else( lupus, kidney etc) All this time(9 years) I was taking Cyclophosphamide as my renal consultant wouldn't even contemplate taking me off it, it was only when I began seeing a rheumy , who was horrified that I had been on it so long, that I stopped taking it with his support.Then my periods settled a bit more, although as I was still taking HRT they were still fairly heavy.I did try a few times to stop the HRT but suffered awful menopausal symptoms and I was still only 39, and on steroids.About 4 years ago I began experiencing symptoms of a womb prolapse, and so 3 years ago I had a hysterectomy.What a relief!! Prior to that a hysterectomy was frowned on because of my medical history,but I felt so well after it, no more bleeding or anaemia, I recovered really quickly, and wish now I'd had it done 20 years ago, and missed out all those years of suffering. The trouble is that when you have a chronic health problem, like lupus or kidney disease, doctors tend to focus on that, and anything to do with 'women's problems' get overlooked or treated as something you should just get on with as a woman, but they can have a huge impact on your general health and quality of life.Unfortunately, also, because of the nature of the subject, it's not something you're going to launch into when you meet someone, no-one wants to discuss how much they bleed etc as part of the general conversation, so you tend to just suffer in silence.! Even discussing with doctors can be difficult at times, but it should be taken seriously and acted on.Systemic illness and drug treatment can definitely affect your hormones/womb function etc and doctors need to be aware of this.Good luck to all of you out there who are presently suffering.

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