Newbie - Bled for 6yrs solid. Burst Cysts.

[Snoozehead]

Hi Ladies, I have been surfing here for a while. So desperate and lonely right now, I'm not sure where to turn. After 6yrs plus of excessive and constant bleeding, contracting clots when period is due, I am broken. I think I may need to leave my job, we have children and hubby works away, I am now in daily pain, tried every pain killer, my body just gets used to it, I get dependent then onto something else. After years of pushing, I've just had an ultrasound scan which shows burst cysts inside my ovary and what looks like my organs bonded together? Since the scan some weeks ago, I've been waiting for a gyne appointment, still no word so I have gone private. Any words of wisdom and what to expect would be very much appreciated. Pain is currently in my hips/pelvis and I've been folded in half for over 5wks with lower back pain. Thank you in advance xx

[AllWeNeedIsluv]

Hi hun

Sorry to hear what your going through such a horrible ordeal.

I don't know exactly what will happen but I think you need to push for a laparoscopy to see what's going on and treated at same time..

Might try and put u on hormones to see if it stops or helps with symptoms.

Just go armed with notes about the last 6 years ask questions about what they want to do if their going to do a lap. Will they treat whatever they find if they can't treat what they see then what's next step. Try and think of every symptom you have a get it out there how it affects your life and find out what your best options are.

Sorry can't be of more help but I would suggest looking into serrepeptase it's an enzyme and it's worked wonders for me iv been taking it just over a month and the blood in my urine has just about gone and my back pain has gone except for period and mid cycle it used to be constant its nowhere near as bad now. I'm taking it to try get rid of a band of scar tissue I have in my abdomen. Hopefully will work but it's done wonders for me so far.

Wish you all the best

Xxx

[Minnskimoo]

Hi Snoozehead.

Sorry to hear you are in so much pain. It can be hell. 😏

It needs addressing asap. No one should have to suffer as you are doing. And I cannot believe it seems okay to leave someone with burst cysts In their ovaries. No wonder you are doubled up!

Tell the consultant exactly what you have posted here. Also, surely they have the ultrasound results on record?

I too had severe endometriosis and it took seven years to diagnose and become visible to the consultant.

I had a hysteroscopy to try and find the cause of my mid monthly blood loss and the other accompanying symptoms. I was prescribed Norithesterone to try and alleviate the bleeding and Mefenamic acid for the pain. Not sure that is prescribed anymore! That said it didn't stop the other symptoms. And like yourself, it didn't seem to work for very long. After years of going back and forth to the gp and feeling bloated and really unwell, I too had a private consultation and a laparoscopy followed. Perhaps what you need too to investigate further! Within the week I was booked in for a total abdominal hysterectomy. My ovaries and internal organs were in a mess. A mass of chocolate cysts fused together and causing the agony at period time. Fortunately, my children were growing up and having any more had not been part of my future plan, so needless to say I partly welcomed the prospect of a hysterectomy. Anything to rid me of the pain.

I can honestly say, after 14 years I have never had any trouble whatsoever. The only downside was having to take HRT, as having ovaries removed would of course, induce a premature menopause. (39 at the time of op)! My mum and sister both had/have osteoporosis, so the HRT was to help maintain good bone health too.

I do appreciate this reply hasn't probably given you the response you hoped for but, I can sense and appreciate the agony you are going through - I wanted to offer you some support.

Good luck with your consultation. All crossed it brings you some welcome relief!

xx

[Tillyfloss]

Hi. How are you feeling today? Have you had the private appointment yet? If you haven't go with a log if possible about the time you have been in pain, I did this and the specialist found a pattern and was able to advise for short term pain relief before the surgery I needed ( happening tomorrow). You need to have as much information about your scan as possible as they don't always have the scans.

I have had ruptured cysts and they are very painful your pain is real and push to get some answers.

Good luck xx

[Snoozehead]

Hi Ladies, thank you for your kind comments, exactly what I needed ❤️ I have an operation in 3wks to determine how badly adhered my organs are from endometriosis, stage diagnosis. Then another op to take a biopsy from my womb and ovary, then hopefully if all well the final hysterectomy. The internal scan showed that my womb is pulled down towards my tailbone and ovary has adhered to my bowel, so possibly bowel surgery too. Tomorrow they are shutting down my ovaries and placing me into temporary menopause with HRT to try ease symptoms. I am trying to think ahead with the children as my husband works away and we have limited family support. I am so grateful that there is a private healthcare system, my surgeon was wondering and believed every symptom I had...this was my biggest battle with GP, trying to get them to believe how bad I am. How are you all?? Xxx

[humanbean]

With such prolonged bleeding you are almost certainly suffering from iron deficiency and other nutrient deficiencies. If you were to fix these deficiencies it ought to make you feel better than you do. I realise, of course, that it won't fix your underlying problems.

(I have a history of severe endometriosis and adenomyosis that began in the early 1970s and continued until the late 1990s. I still have many connected problems that I just have to live with. I'm shocked at the fact that there appears to have been little or no progress in the treatment of endometriosis since then.)

I have found that the NHS is not interested in fixing nutrient deficiencies. Doctors get about 5 minutes training on nutrition and nutrients and don't think it is very important. But it makes a huge difference to feelings of "wellness".

It is possible to get blood tests done privately without the involvement of a doctor, and nutrient deficiencies can be treated without prescriptions. If you are interested, let me know, and I can give you some reliable websites. I suffer from hypothyroidism along with everything else, and people in my situation have found that optimal nutrient levels makes life much more bearable.

One of the big problems is that doctors look at a ferritin (iron stores) level (for example). They see a result like 15 ug/L with a reference range of 15 - 150, and since the result is within range (just) they think this is fine. But what happens if you need a level of 50 or 70 or 90 or whatever to feel at your best? The doctor won't care and will tell you that you are fine, go away.