Unexplained pain : My daughter has been... - Endometriosis UK

Endometriosis UK

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Unexplained pain

Angellouise
Angellouise

My daughter has been suffering with pain and heavy bleeding for five years. Her Gynocologist recommended an IUD which helped with the bleeding but the pain is so bad all of the time with spasms. She is 19 now and can’t work. She has pain all of the time not just monthly. She has had laparoscopic surgery to look for endometriosis but none was found. She had a dermoid cyst removed from her ovary with tissue that spread to her uterus and walk of the Stomach. Her Doctor had never seen this before. She also gets very nauseated.

If anyone has any info on this it would be much appreciated

18 Replies
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I don't have any answers sadly but want to express my sympathy. I'm 22 and my pain is all through the month and is now stopping me from working, along with fatigue. I recently had my lap after waiting more than a year which showed no endometriosis so have no current explanation for my pain. It really sucks and I'm so sorry your daughter is going through a similar thing. I'm waiting now on a gynae referral to consider other causes of the pain (like adenomyosis, pelvic nerve issues), has your doctor considered things like that? It's also possible endo could have been missed during the lap, could be worth requesting your notes and pictures and have another dr look them over just in case.

I have to say the cyst thing sounds strange - did they do a biopsy of the tissue that spread and confirm what it is? If your doctor hasn't seen it before, I would consider getting a second opinion on it. Another doctor might have ideas your current one doesn't.

Sending my best wishes for your daughter xx

Thank you so much. Yes the tissue was looked at it wasn’t endometriosis or anything bad. Her Doc says she has sensitive nerves. We are going to consult with another Gynocologist. Good luck I hope you get some help and figure out what is going on. Thank you.

hugs

Thank you

Hi there, I'm sorry sorry that your daughter is going through this. I can't give you any info just give my sympathy, I'm now 25 and had my first lap surgery early this year. I have issues with my periods for 10 years, and I was only told about endometriosis last year. They did find it during the surgery, but couldn't remove everything.. I'm in continuous pain, feling nauses all the time! seeing so many different doctors; gyne, therapist, hormone specialist but non seems to help much so far.. tell your daugther that she is not alone is she is so strong by simply waking up every day <3

Thank you , and good luck to you.

When she had her lap was it done by an endo specialist? It is possible to miss endo growths if the surgeon is not particularly experienced in this field.

You may want to check out Nancy's Nook on FB. It is all about endo and you might find helpful info in the literature they provide.

I truely hope your daughter finds relief.

Angellouise
Angellouise in reply to Missy100

Thank you so much.

Endo has been missed ensure she sees only bsge specialists don’t allow her to go through surgery again without this

Angellouise
Angellouise in reply to Afrohair

Thank you

Good afternoon and that’s awful that your daughter is so young and going through this pain. I have adenomyosis. Go through labour pains day in and day out, very heavy bleeding through my clothes, anaemic.

I suggest you see a consultant who is a BSGE specialist, I paid privately to see one at a cost of £200 for a consultation as I was told the NHS would take a year to give me a consultant appointment.

I was diagnosed via MRI.

Does she have anything for pain relief?

I also don’t work as it’s so debilitating, it ruins your life. I am older and in my 30s.

X

Thank you for your advice. She takes tramodol and it doesn’t work. We have had to go to the ER numerous times for morphine when the pain gets so bad. I hope you get the answer to help you.

Hope your daughter gets the help she needs too. X

Thank you

There are many other gynecological conditions that could be causing her pain. In addition to endometriosis I also have adenomyosis. It is basically endos evil twin sister. The adenomyosis is when the same Endo adhesions grow inside the uterus muscle lining. You have to have a hysterectomy to get rid of it. It causes the uterus to be bulky and can cause a lot of heavy bleeding.

Number one I would get a second opinion from an Endo specialist. Regular gynecologists have no idea what they are doing and can cause more damage than help. There are two ways of removing Endo and ablation is bad (it’s what regular gyn do) as it leaves way more scar tissue and allows the Endo to just regrow because they don’t remove the root, they just remove the surface Endo.

I would recommend getting her to see a special pelvic physiotherapist. They teach you how to strengthen your pelvic region to help with the pain. It is one of the treatments I had to go through at an Endo and pelvic pain clinic near me.

Diet is another thing you can do now while you wait. Endometriosis causes a lot of inflammation in your body. You want to try and reduce this by feeding your body carefully. You want to eliminate dairy, wheat/gluten and sugar. It is not an over night cure. This takes time for your body to repair on the inside, this is a long term thing. Stay away from processed foods and eat as much organic (non gmo) as you can.

Being on a contraceptive is super important if it is Endo. You will have to play around to see what works for her. If the iud doesn’t then try doing the pill back to back. If you leave Endo to just do it’s thing, it will grow considerably in a short period of time. You can only have so many laps (5-6 max) before they won’t do surgery anymore because the scar tissue leads to more adhesions over time. Endo feeds on estrogen so by keeping the hormones in line you’re not allowing the Endo to grow.

It is super important for her to get it under control as years of unresolved Endo can cause central sensitization. This causes your body to react to stimuli as though it’s a pain signal. This can then turn into fibromyalgia. Your body can only take being stressed for so long. I now have fibro but it’s up in the air what caused it. But it’s not something I would wish on anyone. This does take years of not getting treatment.

I have 17 chronic illnesses so I have a bit of an understanding of the body and how to lower my overall inflammation. Please let me know if you have any questions at all. 💕

Wow thank you so much for all of the info. My daughter is 19 and this has been going on since she was 14 starting with ovarian cysts ruptures. All the best to you.

You’re daughter is so fortunate to have you there. I wish I had an advocate when I was her age. I had my period at 10 and had cysts burst on many occasions. I have gone through a lot of pain because of the lack of care for chronic conditions in our (Canada) medical system. My best advice for her is to listen to your body. She is the only one who can say when something doesn’t feel right to her body. I wish I had listened earlier so I didn’t end up with stage 4 Endo that fused my rectum to my vagina (I had a 50/50 to end up with a colostomy bag).

I’m so sorry you have had to go through this. I’m going to fight like crazy to get my daughter better. All the best to you.

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